Dear Friends- The URL at youtube is a beautiful video of music and photos from Debby’s life that Donna Green-Townsend put together. I cry each time I watch it. http://www.youtube.com/watch?v=QLxOpVlnhDo If that does not get you there, go to www.youtube.com put "debby harris" in their search engine. Here is a link to a wonderful slide show that a very talented professional photographer and dear friend (www.lifeprintsbyshandon.com) put together about our life together as Debby's health declined- http://www.lifeprintsbyshandon-slideshow.com/Schert/ The first URL below is a link to a May 30, 2009 article about Debby and her disease and our family that ran in the Gainesville Sun. I ran into a reporter I had known for about 20 years a few days earlier. She asked me what was going on in my life. I told her about Debby’s illness. She said that she would like to run a story in the Sun about Debby and the way she is dealing with her illness. I asked Debby if she was game and she said that she welcomed the story as she wanted her friends and clients to know what was going on with her. 1. http://www.gainesville.com/article/20090530/ARTICLES/905301012
The second URL is to a guest editorial that I wrote that ran in the Gainesville Sun on December 28, 2009. 2. http://www.gainesville.com/article/20091228/OPINION03/912281001
The third URL is the story that ran in the Sun after Debby died. 3. http://www.gainesville.com/article/20100127/ARTICLES/1271013
The fourth URL is the obituary that we ran in the Palm Beach
Post. Debby grew up in Palm Beach and then West Palm Beach. 4. http://www.legacy.com/obituaries/palmbeachpost/obituary.aspx?n=deborah-mcgavin-harris&pid=139376197 As I understand Debby's history, she had a very crazy childhood and had been adopted at birth by a gangster in Miami who used to hang out with Al Capone. Her gangster dad abandoned his family when Debby was four. Her mother was an alcoholic and she had a pretty crazy childhood from age 4 to 13. She began babysitting for a family that lived in Palm Beach when she was 13. The family (the dad was from Scotland) she began baby sitting for took her in and loved her and loved her and loved her. They had a two year old that they had adopted at birth who had run off several nannies before they found Debby. Debby adopted this wonderful family (Gavin, Dotsy and Sophi) and they adopted her. Debby used to save up her baby sitting earnings and buy fabric designed by Lilly Pulitzer (Lilly lived down the street from the Letts family) and Debby would make matching dresses for Sophi and herself. It was an extraordinary relationship. With the support and urging of Gavin Letts, Debby was awarded her doctorate degree at the University of Florida and became a very highly esteemed Licensed School Psychologist in Private Practice here in Gainesville. She had gazillions of clients over the years. We rented a large formal auditorium at UF for Debby’s Memorial Service. Almost 500 people attended her memorial service. We had a cover dish reception (to hold down costs and to allow people to contribute to the reception through bringing food) in a beautiful rotunda of a new building owned by the UF College of Engineering. After the reception, Kate and I went home. Dotsy and Sophy spent the night at our house and drove back to Palm Beach Sunday morning. After Dotsy and Sophy left, I told Kate that we had crossed the finish line of a very long marathon and that it was now a time for us to create a new family of Kate, our memories of Debby, me, Gavin (our cat who looks like a milk cow, Kate calls Gavin “Cowcat”) and Buddy and Fiona, our chocolate labs who are part Chesapeake Retriever and part Yellow Lab. Kate and I drove to New Orleans and then on to St. Louis and followed the Lewis and Clark Trail to Kansas City and to Omaha and up into South Dakota and finally to Yellowstone Park and up into Wyoming. We left home in our car on July 18th. We buried some of Debby's ashes along a rocky stream that we had visited 3-4 years ago when we went looking for wolves in the Lamar Valley in Yellowstone. After burying Debby's ashes, we slowly drove home through Wyoming and then on small roads through Nebraska, Kansas, Texas, Oklahoma, Mississippi, Alabama and Georgia. We were on the road for 26 days and returned home on August 12th. We had driven 5,694 miles. It was just the two of us in the car.. A remarkable journey. We are home now, creating our new life together. Thanks for visiting our site. Here are some of my journal/blog entries- Reflections on the death of my wonderful wife and best friend, Debby Harris Wednesday, February 3rd. Dear Everyone, It is one week and one day since Debby's passing on January 26th.. I look back on the time between Thanksgiving and January 26th and I think of all the people who went out and spent time helping to care for Debby. I am amazed at all the people who volunteered their time to take care of Debby. I am so thankful to you all for your gift of your time and energy to help take care of Debby. I felt like I was sinking into a deep pit in November. I had strained my back getting Debby up from her lift chair and I was feeling really worn out emotionally. I finally got up my courage and I went out to Hospice, walked into their beautiful lobby and asked to talk to someone about Debby. The intake person came to see me and we talked for a long time. I was talking to them about "in-home" hospice. When another hospice person came by to see us on Thanksgiving Day, the kind Hospice person asked Debby if she would like to go to hospice for a five day respite stay. I had not even heard of a "respite stay". I was totally shocked by her decision to go to hospice for a respite stay. She had been so opposed to even talking about hospice just a few days prior to her decision to go out to hospice for the respite stay. I think she knew I was worn out and approaching burnout. It was a remarkable gift on her part. She offered to leave our home and go to hospice. Think about that... she offered to leave the safety of our home and go to hospice. It still blows me away to think that she made that choice. I think it was Debby being worried about Kate and me and she was offering to leave our house so that some other people could help take care of her. I think she was worried about me. I get tears in my eyes just thinking about this... As I look back on our marriage I regret that I often took her for granted and did not fully appreciate the remarkable person who Debby Harris is and was. That is a very powerful regret. My friends have told me that it is a pretty common regret. Our home seems pretty lonely without her here. Her fingerprints are everywhere. I think I am still in shock that she is no longer living. She was always so alive. I am so thankful to all of you for all the time that you gave to help take care of the Remarkable Debby Harris. Saying Thank You seems so inadequate for all the time that you spent taking care of Debby. I am so very thankful to Stacey Hoffman for stepping forward and offering to be the coordinator of Debby's incredible Hospice Care Team. Debby had someone with her 24/7 from Thanksgiving Day until she died on January 26th. That is pretty incredible. Flossie took the day shifts from 9 AM to 5 PM, Monday thru Friday. All the other times were covered by a volunteer. Wow. That is amazing... So many people cared for her. I think that most people wanted to help our family and they knew how much Debby had given herself to everyone her entire life. Dotsy and Sophy made numerous trips up to Gainesville from Palm Beach. That is a long drive. Debby was a very extroverted person. In retrospect, going to Hospice was a very very good move. Before she went to Hospice, I think that many people were sort of rather hesitant of stepping into the very vulnerable position of being by themselves helping to take care of her here in our home. What would they do if she had a medical emergency? How would they handle her personal needs? How would they feed her? Etc. I sense that having medical assistance just down the hall (at Hospice) helped people feel safe in stepping forward to help take care of Debby. I don't know. I do know this. Your individual and your collective love and care for Debby was an incredible source of energy and life for Debby. I felt like I could let go a bit and do more things to take care of Kate and me. Many of you have written me and told me that Debby gave far more to you than you gave to her. Debby was a giver. She was not much of a taker. Having ALS put her in a new and different position to the position she had been in for most of her life. She had to let other people give of themselves to her. Taking care of her here at our home became too much for Flossie and me. When Debby went out to Hospice and Stacey stepped forward in faith to be the coordinator, something really magical happened. A community of people came together in a way that I had never experienced. Everyone was so focused on taking care of Debby. Everyone was so focused on her needs. I feel so fortunate to have been a part of that remarkable time between Thanksgiving and January 26th. I often felt so guilty for not being out at Hospice with Debby. I felt so torn between being with Debby and being with Kate and doing something nice for myself. It was hard for me to claim time for myself. My psychiatrist and the ALS Social Worker in Jacksonville and so many of you were encouraging me to let go and let Debby's army of friends step forward and help take care of her. I want you all to know that I am so very very thankful to all of you for stepping forward and helping to take care of this incredible person, Debby Harris. I miss her so very much. A huge person has left the room. I have wonderful memories of her and lots and lots of photos of her and all the beautiful letters and emails that so many of you sent to me over the last 14 months. I need to get the photos that we had up at the memorial service. I will always cherish this terrible and wonderful journey that we all went on together with Debby. She was the guiding force on this journey. I often felt like I was just bumbling along, trying to stay ahead of her needs which seemed to change everyday. She encouraged me and coached me on what she needed and how to take care of her. None of us could have gone on this journey without Flossie. I spoke to Flossie today and learned that her husband (Mr. Pleman) has been in the hospital. If you want to reach Flossie, her cell number is 352-222-1192. Her address is 811 NE 26TH TER GAINESVILLE, FL 32641-4814 Flossie gave and gave and gave of herself to Debby and Kate and me. You all did a pretty incredible thing. We were all on a pretty incredible journey together. Debby was our captain. Debby was our rudder. Debby was the magnet that drew us all together. Please forgive me for not sending you all individual Thank You letters or Thank You emails. I am mourning the loss of Debby's presence. I am just trying to get my footing again. The person who I have always relied on (Debby) is not here to encourage me and to guide me. Please forgive me for my shortcomings and for the times that I did not appreciate what all of you gave to Debby (and Kate and me). Thank you. Thank you. Thank you. May God shower all of you with her/his blessings. You all are very remarkable people. Thank you for stepping forward and raising your hand and helping to take care of Debby. Sincerely, john schert February 2, 2010 Dear Friends, Please feel free to hit the delete button and not read this email. It is pretty long. I have a lot to say. We lost the Captain of our Team and we took a huge hit. Debby died on Tuesday morning, January 26th at 8:45 AM, almost a week ago. We celebrated her life at a beautiful Memorial Service on Saturday Night. I estimate that about 400 people attended the wonderful service. Sandy and Larry Reimer and Andy Bachmann and the rest of the folks who participated in the Memorial Service gave us all the gift of a wonderful Memorial Service. Shandon from LifePrintsByShandon helped me put together a very cool slide show about Debby's life. Georgia Hinkley and some other friends helped me put together a wonderful book of your stories about Debby. Everyone who came to the Memorial Service was given a copy of Debby's book. Debby's book is filled with wonderful stories about Debby and lots of fun photos of Debby being Debby. And, everyone who came to the Memorial Service had the opportunity to take home a small blue bottle of Debby's ashes. Our wonderful friends put on a beautiful reception in the Rotunda of the New Engineering Building at UF. Everyone has been so generous with us in so many different ways. Angela Lindner and Margie Williams and so many other people helped arrange the use of the UF Auditorium and the New Engineering Building. Jennifer at Target Copy did her magic and produced 600 copies of the wonderful book about Debby that is filled with wonderful stories about Debby and lots and lots of fun photos of Debby and her friends and our family. I miss Debby a lot. I am so relieved that she is not suffering anymore. The last few days of her life were pretty awful in a physical sense. In the end, the only parts of her body that she had control of were her eyes. Even her eyes were giving her double vision as the tiny muscles that controlled her eyes lost their ability to coordinate. I never had any idea of how awful this ALS disease could be. Sometimes I go out in the backyard at night and sit in a chair on the new brick patio and look into our home thru the glass windows and doors across the back of our house watching for Debby to walk from our bedroom to the kitchen. I look away and then look back again, hoping to get a glimpse of my wonderful friend. My eyes are getting all watery writing this. I miss her terribly. She is a very cool person. She continues to be a very cool person. I had 16 plus wonderful years with her. I am a most fortunate person to have been married to Debby Harris. My only regret is that I wish I had appreciated her more during the first 15 years of our life together. Remember that phrase in the song "You don't know what you got till it's gone..." I did not fully appreciate the wonderful person I was married to until I learned that she had a progressive and fatal condition. I feel badly about that. I regret not holding Debby in a higher place in my heart during the first 14 years of our marriage. I did the best I could do to find out what was wrong and take care of her once the symptoms started around Thanksgiving 2008. I had to balance taking care of Debby, taking care of Kate, taking care of me and keeping our house running and my job intact. It was quite a juggling act. I think I balanced it all pretty well. I am not burned out and Kate seems to be doing well. I don't like to admit this, but, it had become quite difficult for me to go out to Hospice to see Debby towards the end of her life. It hurt so much each time to see her. She had always been so alive and loud and fun and moving around and doing things and all that... It was hard to see her ability to move all of her muscles taken away from her over the last 14 months, a little bit each day. In the end, the nerves that told her diaphragm to move died and she died of respiratory failure. It was all pretty awful. I am trying to let go of those images of her from the last six months. I like to look at the photos I took during the first 14 years of our time together. She is so beautiful in all of her photos. Even as ALS took away her ability to control her muscles, she kept the sparkle in her eyes and in her smile. She kept being Debby as best she could. Up to the very end, she hoped she would get better and come home to live with Kate and me. The disease never took away her dignity and joy of living. She lived a huge life in her 56 years. She gave me about 16 of those 56 years. I still feel like I won the lottery for having met and gotten married to the fully alive person who she was for the first 55 years of her life. Her presence and fingerprints are all over this house, in the blue paint on the walls, in the blue fabrics on the furniture, in the framed photos everywhere. Debby lived large. Debby helped me live large. In some ways, she was like Gavin Letts. They both lived large and full lives and died before they should have. Right now, I mourn for what she had to go thru for the last 14 months. I also appreciate the wonderful gift I was given for the last 16 years. I have tons and tons of great memories and photos of Debby. And, I have a super cool kid named Kate who has many of the same values that Debby had. Kate has many of Debby's qualities. Kate watched her mom for the last 12 plus years and learned so many things from Debby. I have a life to look forward to with Kate. I am so fortunate.... I think that we are on our way out of the "valley of the shadow of death." The psalmist says that we will pass THRU the valley of the shadow of death. I am so glad he said that we will pass THRU the valley. I am so glad that we were not stuck in the valley forever. I sense that we are on our way out of the valley. The valley of the shadow of death is a pretty awful place. I will miss Debby for the rest of my life. And, I am so thankful for the days I had with her. I am the luckiest man on the planet to have had the opportunity to be married to Debby Harris. I still feel like I won the lottery. I am sad that she is gone. And, she lives on in our hearts and in my memories and in the zillions and zillions of photos I took of Debby and Kate. I can hear her laughter in my mind. She had such a huge laugh. We had a beautiful day today and a light rain is falling outside. Kate just took a bath and has gone to bed without me having to tell her to go to bed. The dogs are in their crates on the back porch and the electric power is on. Kate and I had fun tonight watching her favorite television show "House." Gavin the cat just came in thru his cat door and I can hear him eating his dry cat food. I can hear the rain falling lightly. We have a fairly new roof on our house. Kate is healthy. I am healthy. I had a pretty wonderful life for the last 16 years with Debby. We live in a beautiful home that Debby put together and furnished and decorated. Kate and I are members of a wonderful church and I have a pretty cool job at UF. Kate and I have a massive support group of people who love us. We lost Debby last week. But, we will have our memories of our time with her forever. And, I like to imagine that she has been given an assignment of being one of our Guardian Angels. John Moran helped me pick out some really cool photos of Debby several weeks ago. John took them to Jennifer at Target Copy and she printed them out as large posters and dry-mounted them on some foamcore. I called Harold at Harold's Fine Frames and Harold told me how to attach strips of wood to the back of the foamcore so I could put wire on the back of the photos to hang them on the wall. I hung some of the large poster-size photos on the wall in Debby's room at Hospice. After she died, we took them down and had them on display at Debby's Memorial Service as you entered the auditorium and two of my favorites on the stage. After the Memorial Service, the Swiss Guards carried them from the UF Auditorium to the beautiful reception at the New Engineering Building. I am going to hang those huge poster size prints on the walls here in our house. Looking at photos of Debby prior to ALS gives me lots and lots of joy. I want to let go of those images of Debby as ALS took away her ability to control and move her muscles... I lost my wife and best friend. And, I had a year to appreciate her and get ready to let go of her. Letting go of her is hard. And, I get to hang on to my wonderful and fun memories of Debby. I get to see the pure joy in her face in the large photo where she is holding Kate at the adoption ceremony in Judge Larry Turner's private chambers. I love all my photos of Debby. I love looking at them. I mourn for my personal loss of Debby and for our collective loss of Debby. We all lost a wonderful person. ALS is a tough disease. For now, it always eventually wins and kills its victims. Someday, the research folks will figure out how to slow it down and maybe reverse its awful impact on the nerves that control the body's voluntary muscles.... For now, ALS will continue to win in the end. Someday, somebody will figure it out just like they figured out how to prevent polio. Right now, I celebrate and appreciate the wonderful person who we all had in our midst. I won the lottery. I got to be married to her. She was a very wonderful friend. She had her little quirks like everyone does. She was anxious a lot of the time and she spent more money than she should have spent at times. But, hey, I have tons of quirks and I too am anxious a lot of the time and I too have spent way more money than I should have at times. Debby and Kate and I have gone on some pretty incredible trips, we have seen lots of landfills in distant places and we have had a wonderful life together. We all have our Debby memories. I am going to try and not feel so sad all the time. I am sure I will continue to feel sad some of the time. I just don't want to feel sad all of the time. I have been given much. The Grace I have been given is gigantic. I got to be married to a wonderful person for a long time. Things could be a lot worse.... We lost Debby last week. But (and that is a HUGE but), we had her for a long time and she will always live forever in our hearts and in our wonderful and funny memories of Debby being Debby. I have felt so sad and so overwhelmed for so long. You folks have read a lot of pretty awful stuff. I hope I have not been feeling sorry for myself too much in all these words I have been sending to you all. Please forgive me if I wrote too much. You have my full permission to delete these emails and never read them or tell me to quit sending them to you. I am going to try and let go of the sadness and celebrate Debby, the incredible and wonderful person who we all had in our midst for such a long time. I am so thankful to all of you for all the wonderful love and support you have so freely given to Debby, Kate and me over the last year-plus. I am a lucky guy. I got to be married to Debby Harris. And, I have Kate and tons and tons of wonderful friends who have helped me a lot over the last year. I am a very fortunate person. Nobody else can say that they were married to Debby Harris. Nobody else got to spend as much time as I have gotten to spend with Debby Harris for the last 16 or so years. We had some wonderful times and some incredible fights. It was a very intimate relationship with lots of drama. It was not a relationship with a lot of indifference in it. It was an intense and fun relationship and marriage. I am a very fortunate person. With much thankfulness for all of your Love, john ps- Please remember to invite Kate and me to do things with you all. It is harder to go to things without Debby along. I just joined the ranks of the single parents. I need your help raising Kate. I especially want Kate to develop friendships with Debby's lady friends. Please consider adopting Kate the way that Gavin and Dotsy adopted Debby when she was 13. We all need more Gavins and Dotsys in our lives. Many of you have been reaching out to Kate a lot. Thank you. Please keep reaching out to Kate. And, if you feel like it, drop something in one of the coolers out in our driveway next to the garage and then call me on my cell (352-339-2010) and tell me that we have a surprise waiting on us. Don't worry about putting any ice in the coolers. As soon as you call me, I will make sure it gets into the fridge. And, our driveway has lots of shady spots. We absolutely love all the wonderful food gifts you all have given to us over the last year. We have an enormous support group of loving friends. We are so fortunate to have you all loving us and taking care of us.... Please don't stop now. Please keep loving us and taking care of us. We lost the Captain of our team. She was a wonderful Captain. We need your help over the coming months. We took a big hit when we lost Debby. Kate and I are in a little tiny boat and sometimes the waves seem so large. Please keep reaching out to us. We really do need your help. And, if you see someone who needs our help, please tell us about them so that we can do something to help them, just like you all have helped us so much over the last year. When you are hurting, it is good to help someone else who is hurting. It takes a village and we have a wonderful village of friends. Thanks so much... js To see the past year in photos you have to copy and paste this link into your browser- http://picasaweb.google.com/jdschert/DebbyHarrisPhotosOfOurJourneyFromDecember2008ToOctober2009# To see various photos of Debby, mostly taken over the past 15 years, cut and past this link into your browser- http://picasaweb.google.com/jdschert/ScannedPhotosAt300Dpi# Here is a video montage of Debby's early life that our good friend Donna Green-Townsend put together. You will probably have to cut and paste this link into your browser- http://www.youtube.com/watch?v=K8FgSkl7ocQ Here is part 2 of Debby's montage- http://www.youtube.com/watch?v=QLxOpVlnhDo For a very good slide show with sound that our wonderful friend Shandon put together some months ago when Debby was still walking, please cut and paste the link below into your browser- http://www.lifeprintsbyshandon-slideshow.com/Schert/ Much love... john Tuesday, Jan 5, 2010 8:15 AM Dear Friends, I wrote this and did not read back thru it as I need to take Kate to school right now. Please forgive me if there are typos or if I have said anything to offend anyone. I say this as I did receive one email which indicated that my previous emails were offensive and disrespectful of Debby. So, I want to offer my sincere apologies to anyone who I have offended with my sometimes very graphic description of our journey over the past year. I really do mean to convey my apologies if I have offended you or have done anything disrespectful towards my wife and best friend. Please forward this email to Debby's many friends. Thank you. Here is the latest update.... When I was leaving Haven Hospice last night, I sat down, leaned up against the wall and waited in the hallway until the nurse who was attending Debby came out of a room she was in helping a patient. Her nurse last night was a very gentle and lovely nurse named Kaya (I know I did not get the spelling right). Kaya and Debby have a very special and loving relationship. Kaya asked me if I wanted her to feed Debby or not feed Debby. I thought for a moment and indicated that I didn't have a clue what she should do. I told her that she was an expert at these things and that she should treat Debby in the way she would treat her mother or sister in a similar situation. Kaya said that she thought it would be more comfortable for Debby if she did not feed her. She also suggested that I consider whether or not she should put in a catheter. I again told Kaya that she should do what her heart and incredibly smart and gifted mind told her to do. I told her that as far as I was concerned, she should do whatever she thought best in all aspects of Debby's care. My wonderful brother Fred just called me. He works for the VA now and he stopped by to see Debby on his way to work. He said that the very talented Hospice nurses had provided excellent care for Debby last night and that the "death rattle" in her lungs (caused by liquids gathering in her lungs) was markedly decreased. He said that Debby was resting comfortably. Amazing....... Debby is "my wife" and "best friend". She is also a child of the Universe and her friends are legion. When I say that Debby is "my wife", I don't mean to imply any sort of ownership. Debby has zillions of friends of all different types. So, (and this is from her husband), if you want to stop by and see Debby and pray for her or just be around her for a while or say "goodbye" to her, go for it. Please don't do anything to wake her up if she is sleeping. Please don't ask her any questions or ask her to blink her eyes (to answer your questions). If she opens her eyes and looks at you, feel free to talk to her very softly or give her a brief foot rub or touch her cheek or stroke her hair. Please do not try to engage her in a conversation. Just please tell her that you love her and that she is a wonderful person and thank her for all the love she has given to you. Please be respectful of other people who come into who might like a few minutes with her. I am going to ask Flossie to stay in the room at all times today. Debby's visiting hours are 24/7. Go anytime you want to see her. Please limit your time with her to allow other people to have their moment with her. Thank you for your prayers and love and support for Debby, Kate and me. This has been an incredible journey for Debby and all of us. It is time to say Goodbye to her and thank her for all the love she has so freely given to us all. You all are so incredible. I have received hundreds of loving emails from all of you over the last year. After Debby dies, Leslie Sahler is going to spend some time with Debby and help her in her transition to the other side. When Leslie is done, some men are going to help me lift Debby up off the bed and put her in the beautiful box that Gary Appleson has built. We will cover her insulated box (built with local cypress) and take Debby by our house to pick up some frozen containers of water. We will then take Debby to UCG and place her box in the small chapel next to the Memory Garden. I will lock her box shut with a padlock. She will lay here in rest for about 48 hours. Feel free to stop by and pray for her or light a candle or do whatever you need to do to say Goodbye to this incredible woman. Allison's beautiful leather bound book will be there in case you want to write a note or letter to Debby, Kate or me. After the 48 hour period is over, I will obtain permission from the Medical Examiner to have Debby's body cremated. The Swiss Guards (the people who I have asked to stand guard over Debby's body the way that the Swiss Guard stands guard over the Pope's body) will help me load Debby's box back into my SUV. I will then take Debby's remains to Forest Meadows Funeral home where they will cremate her body. I will wait there until the cremation is finished and bring her ashes back to our house. Debby has asked that her ashes be given to her friends. To that end, I have bought some small cobalt blue bottles that we will put her ashes into. You can get one of the bottles of ashes at the Memorial Service that we will be holding for Debby at UCG. We are going to have a reception/party in the large room after the Memorial Service. Debby has asked me to put together a slide show of photos of her, so, I hope that we will be able to hold the Memorial Service on Friday, Saturday or Sunday night. I want the sanctuary to be very dark so that everyone can see the photos clearly. Feel free to bring something to eat or drink and share with others at the party/reception that follows the Memorial Service. We had a pot-luck wedding and we are going to have a pot-luck reception/ party after the Memorial Service. I want to put some chairs out at the reception to maximize the intermingling of everyone who comes to the reception. Thank you all again for all your love and care for Debby and Kate and me. The journey continues and we continue to find special gifts along the path. With much love and thankfulness. john > Tuesday, January 5th, 12:35 AM > My oldest brother Fred (who is a retired surgeon) called me late > this afternoon (around 6 PM) and said that Debby had a bad rattle in > her breathing that is commonly called a "death rattle". I asked him > if he thought Debby was about to die. He said he did not know. He > said that she had started the process of dying... He said that he > could hear the rumble of liquids in her lungs that is indicative of > the fact that liquids are slowly filling up her lungs, a sign of > impending death. > I raced to Hospice. My brother Fred and Laura Kloosterman were > there in the room with Debby. Laura is a wonderful student from UF > who used to help us around the house... > I held Debby's head in my hands and cried and told her over and over > how much I love her and that she is the most beautiful woman on the > planet and how lucky I am to be married to her... > I rubbed my cheeks against her cheeks... > I put my forehead against her forehead... > I just wanted her to know that she is loved and that I was there > with her... > She started making a cooing sound over and over at me the way a > turtle dove coos... > I put my forehead against her forehead and my cheeks against her > cheeks and made a cooing sound back to her over and over.. > She kept cooing at me and I kept cooing back. > She opened her eyes and looked at me for a long time.. She kept > closing and opening her eyes.. It was so hard for her to keep her > eyes open. I think she was trying to let me know that she knew I > was there with her and then she closed her eyes... > Her breathing became very shallow and irregular... > I kept thinking to myself that this must all be a dream, that this > cannot be my lovely Debby lying here in the bed at Hospice... > At one point in time, I thought she had quit breathing... > I thought that she was right on the edge of death.... > But then, she started breathing again and her breathing became > stronger.. > Some more very close friends came into the room... > Then, after about an hour, she rallied and opened her eyes and tried > so hard to tell me something using her computer... > Her breathing became stronger and stronger and then, she tilted her > head forward and went to sleep... > I finally came home around 11:30 PM. Kate was home by herself. > The Hospice nurse said it is not unusual for someone to rally like > this. > I don't think she is going to be with us much longer... > Thank you for your thoughts and prayers... > john > > > On Jan 4, 2010, at 5:28 AM, John Schert at home wrote: > >> January 4, 2009 >> Things are winding down..... >> If you have a story or letter that you would like included in the >> Book About Debby that we are putting together, please get your >> story or letter to me via email by 5 PM today, January 4th. I >> cannot guarantee that anything submitted after that date will be >> included. The book is shaping up quite well with about 20 pages of >> printed photos. (We need more stories from the Scots.) >> We will finish the final edits and take it to the printer in the >> next few days. >> If you have already submitted a story or a letter, please to go www.drdebbyharris.com >> and look for your story or letter. If it is on the site, then it >> will be included. If it is not on the site, it will not be >> included. Some of you have told me that you sent your story or >> letter directly to Debby. I would respectfully request that you >> also send a copy of your story or letter to me at jschert@gru.net. >> I do not control what is on (or not on) Debby's laptop. It has a >> real hodgepodge of stuff on it. So, if you sent it to Debby, please >> also send it to me. We have received a wide variety of letters and >> stories about Debby that are fun to read. >> Thank you. >> john schert >> On Jan 4, 2010, at 4:25 AM, John Schert at home wrote: >> >>> January 3rd update- >>> >>> Debby's neck muscles are clearly their losing strength very rapidly. >>> >>> When I went by Hospice to visit her tonight, she was not able to >>> use her computer or manipulate her headmouse and her tiny >>> reflector dot that we place on her nose. >>> >>> She has her head and face all the way forward with her chin >>> resting on her sternum. She cannot move/lift her head out of this >>> position. She cannot see the screen because she has to sleep with >>> her upper body in a highly elevated position and her head is >>> leaning so far forward. >>> >>> Even if she were able to see the screen, her neck muscles are too >>> weak for her to be able to move her head around to be able to use >>> the headmouse.. >>> >>> It is all so very sad. I sense that we are in the end days. She >>> thrives on seeing her friends. You can go by anytime to see her. >>> She might be asleep when you arrive. Flossie is there from 9 to >>> 5, Monday thru Friday. Debby's LotsAHelpingHands volunteers who >>> Stacey Hall coordinates (after a brief break/holiday vacation) >>> cover all of the time that Debby does not have her beloved Flossie >>> with her. >>> >>> We are all better people for knowing Debby. >>> >>> My heart is broken as the disease process approaches closure. >>> >>> Thank you all of your support. >>> Sincerely, >>> john Friday, January 1, 2009 Debby is having a harder and harder time keeping saliva out of her trachea. She is having more and more episodes of having "stuff" (saliva, post-nasal-drip secretions, etc) go down her trachea. When this happens, she goes into a choking event. This is not a good sign. This type of choking/aspiration activity often precedes aspirational pneumonia. Most people diagnosed with Progressive Bulbar Palsy eventually die of aspiration pneumonia. Here is a guest columnist piece that ran in the Gainesville Sun on Monday, December 28, 2009- http://www.gainesville.com/article/20091228/OPINION03/912281001/-1/OPINI ON?Title=John-Schert-The-story-of-Debby-s-journey John Schert: The story of Debby's journey By John Schert Special to The Sun Published: Monday, December 28, 2009 at 6:01 a.m. About a year ago, around Thanksgiving, my wife's voice developed a strange slur. The quality of Debby's speech continued to deteriorate during the last part of 2008 and into early 2009. We went to many expert physicians, and, in early April, Dr. William Triggs, a neurologist at Shands at UF, told us he suspected that Debby had Progressive Bulbar Palsy, a degenerative neurological disease closely related to ALS/Lou Gehrig's Disease which kills the nerves that enable us to control our voluntary muscles. There is no cure for ALS. Debby's form of the disease is especially rapid in causing death. Debby had a feeding tube inserted into her abdomen in late April, just before she lost the ability to eat food through her mouth. In late May, The Gainesville Sun ran a very thoughtful story about Debby, our family and how we were dealing with the disease. After the story ran, large numbers of loving people contacted us to ask how they could help. Three women formed an organizing committee, and large throngs of loving and supportive people came into our lives. Our congregation at the United Church of Gainesville prayed over and laid hands on Debby. We sought all sorts of alternative medicine treatments. Many people all over the world prayed for Debby's healing. Debby is now completely paralyzed in both arms, hands, feet and legs. She cannot speak. She is able to move her neck and communicates with us with a small reflective dot placed on her nose and a device called a HeadMouse Extreme that is attached to the top of her laptop computer. Throughout the progression of this disease, Debby never complained or assumed the role of victim. She has tried to fight the disease and maintained an incredibly positive attitude and sense of dignity as her ability to speak, eat, and move her hands and legs was taken away. Many of you have followed her story through her Web site www.drdebbyharris.com . Debby made the decision to check herself into hospice on Thanksgiving Day. She is now in Room Number 7 at the beautiful E.T. York Hospice Center on N.W. 39th Avenue near Interstate 75. Volunteers sit with her 24/7 as she cannot hit the nurse call button. Debby continues to hope that she will be healed and return home to live with Kate, our 12-year-old daughter, and me. She "talks" to us using a very special computer and a small reflective dot on her nose. She is amazing. My wife grew up under modest circumstances, lost her father at age 4, applied for scholarships, worked hard and earned three degrees at the University of Florida. She became a distinguished school psychologist in private practice in Gainesville. She specializes in identifying gifted children and diagnosing and developing treatment options for children with learning disabilities. People from all over the Southeast U.S. brought their children to Debby to work her magic and help them understand how their child's brain works and how to help them do better in school. I am writing to tell you about our journey, share my wife's incredible spirit and positive attitude and to thank our community for all the love and support that has been given Debby, Kate and me. Hundreds of people reached out to us by cleaning our house, washing clothes, changing sheets on the beds, blowing leaves off the roof, cleaning the garage, toilets and kitchen, installing emergency lighting, tidying the yard, cutting firewood, pressure washing algae from the walkway, and installing wheelchair ramps and making the house more accessible. Friends and acquaintances took Kate to see a therapist, go to the movies, go horseback riding and attend a concert. They picked my daughter up at school and tutored her. Generosity eased the passage of each day. We were given a lift chair and shower chair, money to buy communication equipment for Debby and pay medical bills and monthly expenses, gift cards to go out to eat, and pet food and supplies. Generosity extended to the human spirit. Everyone encouraged us to hold on to hope. Some prayed. Others listened while I grieved. Debby has needed increasing amounts of care. It has been given freely. People held a huge birthday party for Debby. They have brushed her teeth, bathed her, given her showers, cut her hair and given her massage and acupuncture. They planted a vegetable garden for our family and a butterfly garden for Debby. If you want to see the beautiful letters that have been sent to Debby go to her web site www.drdebbyharris.com We are overwhelmed by your help, generosity, and love. The incredible level of support we have received is a reflection of the large numbers of caring people in this community and the wonderful person who is my wife. Thank you for loving Debby and my family. John Schert (jschert@gru.net) is married to Debby Harris. Debby, their daughter Kate and John Schert all live in Gainesville. December 28, 2009 Debby can move her neck a little bit, smile, laugh (silently), yawn, open and close her eyes, make cooing sounds (like a beautiful dove would make) and breathe. She has an incredibly strong will to live. The volunteers who have signed up have come out in a big way to help take care of Debby at Haven Hospice. We need more volunteers. If you can take some hours to sit with Debby, please send an email to John Schert (jschert@gru.net) or Stacey Hoffman (booberdoodad@yahoo.com). Either Stacey or I will send you an invitation from www.lotsahelpinghands.com After you register, either Stacey or I will "approve" you and you can then pick an open spot on the calendar to go out and sit with Debby. She is able to "talk" to you using her HeadMouse Extreme, her MacBook and a reflective dot on her nose. She talks one letter at a time and her neck muscles have gotten weaker, so, it takes a bit of time. If you feel like sending her an email, her email address is dharris@gru.net My cell is 352 339 2010. Debby is totally paralyzed in her hands, her arms, her feet, her legs, her shoulders, etc. It is like someone has been going around in her body cutting the nerves that tell her muscles to move. Her sensory nerves are working just fine. It is the nerves to the voluntary muscles that are destroyed when someone has ALS/Lou Gehrig's Disease. You don't have to be a close friend to go out and volunteer to sit with Debby. She occasionally aspirates some saliva into her trachea, so, when this happens, you push the button to raise the head of the bed, lean her forward and hitting her on her back and hit the Nurse Call button and tell them that Debby needs help. They will come right down and take care of helping Debby get her breath back. The nurses will take care of feeding her thru her stomach tube and giving her her meds. The Hospice Personal Care Assistants will take care of her personal needs. She will tell you when she needs some assistance from the Personal Care Assistants. All you have to do is "be with her" and talk to her and listen to what she has to say. We keep a wash cloth on her chest just below her chin to soak up the saliva that comes out of her mouth, so occasionally, you can change the wash cloth. Occasionally, she will ask you to adjust the placement of her computer on the table in front of her or moisten a wash cloth with some warm water and wipe the "sleep" out of her eyes. You can watch a movie with her (she wants to see Julie and Julia and Chariots of Fire), read poetry or inspirational/healing passages or writings to her, pray for her, sit quietly with her, listen to a CD with her, play the guitar and sing to her, play the flute to her, etc. She loves visitors and meeting new friends. Debby Harris is a most amazing person... Please send us a letter about your experiences with Debby that we can post on this site. Alternatively, you can write a letter to our daughter Kate (age 12) about her Mom that she can read years from now and use to help keep the memories of her Mom alive in her. If you have any questions or suggestions, my email address is jschert@gru.net My cell is 352 339 2010. I need some help finishing up Kate's Fort. It still has a lot of holes in the walls that need some trim work. It also needs some insulation in the ceiling and walls. I also need some help chopping some wood up into smaller pieces and our roof has a lot of leaves on it that should be blown off. You all have been so good to us with your acts of love. Thank you so much for all you have done for us. Sincerely, john schert ps- If you are offended by anything I say in these letters, please hit the delete key and forgive me. I am a bit crazy and burned out. Aslso, if I say anything that offends you, please drop me a note and I will take you off the distribution list. Debby, Kate and I are all doing the best we can in a very tragic situation. Thank you for your love and patience. The Morning of December 11, 2009 Dear Friends, Sadly, Deb's condition continues to deteriorate. The disease continues to kill the nerves that control her voluntary muscles. The only activities that she can do anymore are smile, move her head a bit, open and close her eyelids, move her eyes and breathe. Her neck muscles have lost a lot of strength and it is often quite a struggle for her to "talk" to us using her HeadMouse and her MacBook. She controls the cursor by moving her head and it is getting harder and harder for her to move the cursor around the screen to pick the letters she wants to use. It often takes quite a bit of deciphering to determine what she is trying to say as the words often contain all sorts of extra letters and numbers and I cannot understand what she is trying to tell me. Her ability to communicate is going to continue to degrade as the nerves which control her neck muscles continue to die. Every nerve coming off her spinal chord that controls voluntary movement has been under attack by the disease and she has lost the ability to move every single muscle in her hands, arms, feet and legs. When the nerves that control her diaphragm muscles die, she will die of asphyxiation. If she continues to aspirate saliva into her trachea, she will get pneumonia and fall asleep and die. Doctors often call pneumonia "an old man's best friend". If the nerves that keep her larynx open die, she will choke to death. This is a very insidious disease. It kills by killing nerves that control voluntary muscles and brain cells. It is rather remarkable to watch the disease advance and watch a person slowly lose the ability to move individual muscles over a period of time. It is like watching someone die by a thousand cuts. It is painful to watch, I cannot imagine how painful it must be for Debby to slowly watch all those muscles being taken away from her. Debby continues to smile and struggle and have a positive attitude and give unconditional love to everyone around her. She hopes for a cure. She has never lost hope, felt sorry for herself or gone into a depression. Lifting her out of the bed using her Hoyer Lift for her to go to the bathroom is a very difficult process, but, she does not mind being manhandled (usually she is woman-handled) to get the sling underneath her body and then jacked up into the air. She has a remarkable ability to maintain an incredible sense of dignity even as she has to be lifted up into the air using the Hoyer Lift Sling. She is so poised and proud and humble and loving and laughing and loving even under the most awful conditions. She has large numbers of visitors each day and evening and holds "conversations" with them using her Headmouse and her MacBook. Debby continues to "be all about everyone else". She has never been about Debby. She has always been about giving herself to others and she continues to give herself to others even as the disease takes away her ability to do the most basic muscle movements. Her long beautiful fingers which used to hold her Pilot RollerBall Pens as she wrote with her beautiful handwriting are now motionless, just dead weight. Her beautiful ankles and toes are now permanently pointed downward like a ballerinas feet "on point" as her calf muscles have contracted more and more tightly. Her jaw is firmly clamped shut as the muscles which close her mouth are much stronger than the muscles which open her mouth. I used to pry her mouth open with a sharpened plastic suction cannula to brush the insides of her teeth. She no longer wants me to brush the insides of her teeth as it is too painful for her when I try to pry her mouth open. Her lower jaw sometimes slides off to the right or the left and gets stuck in that painful position. To get her jaw back into proper position, you have to insert your fingers beneath her upper and lower lips and use a lot of muscle strength in your hand to get her jaw back into the proper position. Debby Harris is a remarkable person. She greets everyone who comes into her room at Hospice with love, joy and grace. I am so very proud to be married to her. As Kate and I rode home in our car to our house from the ET York Hospice Facility last night I cried and cried as I realized that she is a gigantic part of every single part of my life and how empty and sad I will feel when she is no longer with us. Big tears are rolling down from my eyes as I write this while I am sitting in a chair in our living room that she picked out from a Lands End Magazine. Her fingerprints are everywhere in our house, in the beautiful soft blue paint that she picked out for the living room walls, in the books that line our bookcase, in the photos of all of the people in her life that she has lovingly framed and put on display everywhere and in the beautiful blue furniture which we brought home from her office when she closed her practice in March. I feel so sad... People come up to me and ask me how I am doing. I never know how to answer that question. How am I doing? I am doing awful and I am doing OK. I am watching my best friend die a slow and horrible death as everything is taken away from her. I cry and cry and feel overwhelming sadness as I contemplate the future without the kindest, most giving person I have ever known. Debby is the only person who really understands me and loves me with unconditional love. Thank you for your support. Sometimes I feel badly that I cry so much and feel so much sadness. Sometimes it feels selfish to feel this way. Sometimes it feels OK to feel he tears roll down my face. I just cannot help myself. I am losing the kindest, most loving, most articulate, most beautiful person I have ever known. I feel sort of ashamed of myself as I never realized how much Debby enriched my life until now. I feel like such a jerk for not appreciating her more earlier in our marriage. I am losing a person who loved me unconditionally and delighted in loving me. She loved all the parts of me, the impulsive parts of me, the creative parts of me, the impatient parts of me, the creative parts of me. What a selfish person I have been all these years to not realize that I am married to the coolest person on the planet. I am the luckiest man on the planet to have been married to Debby for the last 14 years. It has been quite a ride, full of love and arguments and travel and conversation and beauty and passion and art and life. I will miss her enormously. She is the kindest, most loving person I have ever known and she has enriched my life beyond anything I could ever have imagined. Please send me a story about Debby Harris or send me a letter to Kate. Thank you so much for your love and support. john December 2, 2009 Dear Friends, Debby went to Hospice for a Five Day Respite Stay on Thanksgiving. It has been pretty overwhelming taking care of Debby here in our home and after a lot of soul searching and talking to many friends and mental health professionals, I decided that it is best for everyone (Debby, Kate and me) if Debby stayed at Hospice. Debby cannot move her hands, fingers, arms, legs, etc. Her neck muscles are still working and she continues to "talk" using her MacBook and her Headmaster Extreme. I don't know what the future holds. I don't sense that Debby is going to be with us all that much longer. Medicare and Blue Cross will not pay the Room and Board Charge, so between what we pay Flossie to be with Debby during the day and the Hospice Charge for Room and Board, we are spending a little over $300 a day. Please feel free to send us a contribution to help us pay for this. Our home address is 5803 NW 67th Court, Gainesville, Fl 32653. You all have been so supportive in so many ways with food, prayers, company, financial contributions, help moving heavy things, etc. Thank you so much for your support. Debby requires constant supervision as she sometimes aspirates saliva into her trachea and goes into a very frightening coughing spasm. She cannot pull the string to call the nurses and so Flossie or one of her many friends is with her 24/7. She is surrounded by photographs of her family and friends and she gets many visitors. For me, it is very sad to see her there in her bed completely paralyzed doing her best to talk to us using her MacBook and her Headmouse Extreme. She has always been a very vigorous and active person and it is painful to see her lying in bed paralyzed, not able to talk. Debby continues to hope for a recovery and a return to full and complete health. I admire her resolve to live. I just do not think that the disease will allow her to live for much longer. The nurses and other staff at Hospice are very nice to her. Vam York visited her today. She gets lots of visitors. We need volunteers to stay overnight with Debby, so, if you are willing to help in that way, please contact Stacey Hoffman to arrange a time to come out and stay over with Debby. Stacey's email address is booberdoodad@yahoo.com Stacey's cell phone number is 352-256-9757. We need help. You do not have to have any sort of medical training or medical skills to spend the night with her. She loves having people sleep over with her. Please step forward and help us in this way. This is very important. Much love to you all, john ps- I have posted several letters on this site (scroll down a bit) that have come in with stories about Debby and how she has impacted people's lives. After the letters, there are also some historical updates on this site regarding Debby's condition as the disease progressed. This is an invitation- I am inviting you to write a letter to Debby or to tell a story about Debby or share your thoughts with Debby thru your writing. I am also inviting you to come by and visit with Debby at the Haven Hospice House here in Gainesville. She is in Room Number 7. I would respectfully ask that you send your letter or story to me and I will pass it along to Debby. My email address is jschert@gru.net As you know, our daughter Kate is 12.5 years old. Some people have shared their thoughts about Debby in the form of a letter to Kate. You can also do that if you want to. As her dad, I really like the letters that have come in about Debby for Kate. Thank you so much if you have sent one in. If you have not sent something in, please consider doing so in the very near future. Again, if you feel so inclined, p lease send me (jschert@gru.net) a story about Debby or your thoughts about Debby or a letter to Kate- Here are some of the letters we have received. My Sister Debby by Sophy Letts- (Note by the editor- Sophy is Debby's "little sister". Sophy and Debby are extremely close to each other. Sophy's letter about Debby is very very very special. I forgot to place it on the web site in mid November when Sophy sent it to me. I am rather embarrassed by this oversight on my part. My deep apologies to Sophy. Debby has photos of Sophy up all around our home. js) Where do I begin….at the beginning???? 43 years ago??? So much has transpired over those years, it’s hard to know what story to tell, what memories to relay… all are so special. It began sometime late in 1966. I was 2 years old and Debby was 13. She lived around the corner and began to babysit for me. According to stories, I was not the easiest child, so finding a babysitter who stuck around was not an easy task. But, there was Debby, at my door with her warm smile, sparkling eyes, kind heart, and an abundance of calm patience. As I have jokingly said for years, “she’s the babysitter that came and never left” and one who truly became my sister, not just a sitter. I recall the walks and bike rides down the Lake Trail in Palm Beach and climbing the big Ficus tree by the Flagler Museum. Having our photo taken together in a Seagrape tree along the Lake Trail in matching Lilly Pulitzer dresses as a Christmas present for “our” parents, Dotsy and Gavin. I remember Debby using her babysitting money to buy fabric to make me clothes. She also bought me special pieces of jewelry when I was younger, including a pinkie gold signet ring, which I wear to this day. How typical, the constant giving, caring person she always has been and is. When she left to go to college at the University of Florida in Gainesville, I would take train trips to go see her. We would go for walks/climbs through the forestry areas of Gainesville. I remember a fun trip to St. Augustine. I can still see the picture she took of me with that lollipop she bought me. She had my long hair in pigtails and I was standing there sucking on the enormous spiral colored round lollipop. I remember one of my other many visits to see her. She and her two roommates were throwing a party – a rather wild party. I’m sure Gavin would never have approved of my being there, but I had fun nonetheless and recall getting into Debby’s roommate’s chocolate colored nail polish and painting my nails. I believe Debby made sure it was gone before I got on the train to return home. The trips “home” to Scotland with Dotsy and Gavin were probably some of our most special times. Debby would take me to play in the gardens of 6 Royal Circus, the flat we had in Edinburgh. We would have wonderful picnics on the moors of Scotland and/or on the grounds of the various castles we would visit. Back in Palm Beach, when Debby returned for visits, we, again, would go for walks along the Lake Trail… no more climbing trees though… we were past that stage. There were also those years of watching the finals of Wimbledon on the porch and drinking champagne with Dotsy and Gavin. As time went by, she was my maid of honor as I was hers when she and John were married in April 1995. Sadly, a couple of years prior to her marriage, Gavin died. It was a tragic time for both of us and we needed one another more then, than ever before. We got through it, although still misty at times…. After marrying John, they would always come home to Palm Beach for Thanksgiving with Kate and on occasion, Debby and Kate would come in the spring time. I recall when Kate was first born and they made their first trip south with her. It was the summer of 1997. The car was loaded down with everything you could imagine! Kate is an incredible joy to Debby. As with me, Debby has devoted every ounce of her love to Kate. To this day, Debby has the most beautiful smile, sparkling, gleaming, life-filled eyes, and warm, wonderful, loving heart. It is what sticks out most when you see her or first meet her. It is what fills my memories. With much love to Debby! Sophy We Stole The Baby-Sitter And She Stole Our Hearts by Dotsy Letts- Debby was thirteen when she came into our lives and Sophy was only two. Debby lived just around the corner on Seaspray. She sat for Patricia Goodhue who had two boys. Pat made the mistake of sharing Debby with us. How could we resist stealing her away? Debby became more and more part of our lives, our family, our hearts. She was Sophy’s big sister. She helped raise her. She taught her to swim, climb trees, and love music – among other things. Scotland was an important part of our lives. Debby went with us and she was embraced by all the kith and kin. She is as much beloved in Scotland as here. How wonderful that we shall be celebrating St. Andrew’s Day with her. Debby has always loved the joy of celebration, fun, and love. I am so glad they are bringing this bit of Scotland to my darling Debby. With a heartful of love, Dotsy Letts Dearest Debbie, What an amazing person you are! I feel so lucky to call you a friend and to have met you so many years ago. I know we met at Talbot, but I cannot remember how. I know however that I have always enjoyed your kindness, creativity, fun spirit, and love for kids. You have been a real inspiration when it comes to looking for the best in people, especially children. Your advocacy for gifted kids has been refreshing. Most of all, I enjoy your love of life and your optimism! My fondest memories are the times we shared when the girls were younger...Scottish dancing and the mother-daughter book club. When Lauren was 6, I mentioned to you that she was interested in Irish dancing. You told us that Kate was taking Scottish dancing and introduced us to her teacher, Lindsey. Well, here we are, 7 years later, and Lauren is still dancing with Lindsey! Although Kate continued for only a short time after Lauren started, I will always be grateful for that introduction. Your enthusiasm for all things Scottish, and your strong support for Kate as she worked through her dances was an inspiration. Highland dancing has given Lauren and I some wonderful experiences. The exercise, training, classes, and competing have been great for Lauren. The trips we have shared as we travel to competitions have been such a lovely, fun, bonding experiences for the two of us (there is a lot of silliness and good/bad singing that goes on in the car on these trips!) And we have met some wonderful people and made many new friends in the dance community over the years. One of my favorite trips was when we went to Orlando and shared an adjoining room with you and Kate at Disney World! We had a great chance to talk and share by the pool while the girls swam. More recently, it was such a pleasure to put together the “Scottish show” at your home for you and your friends and family! Lauren and I would not have stumbled our way into the great Scottish adventure if it were not for you and Kate. Thank you! The mother-daughter book club was also something that came from you and was such a terrific thing for Lauren and I to share with you and Kate. I would never have thought of doing a book club with first graders, but it was fun. The girls came up with some creative ways to express their ideas about what they had read! My favorite adventure was our trip to Marjorie Kinan Rawling's home and our meal at the Yearling restaurant. Your encouragement of the girls, creative questions and projects, and fun guidance taught me a lot. And again, you introduced us to a whole new, interesting group of people! Although we did not see each other often as the girls got older and went to different schools, the thought of you always brought a smile to my face. Your spirit is infectious. When I heard that you were fighting ALS, it broke my heart. Life is not fair. But then I knew you would focus on what is good in life and inspire us all to do the same. A network of loving, unique, and caring friends has formed around you, and yet again, been an inspiration to me. Every time we interact, I meet new, quirky, wonderful people! These are the lives you have left your mark on and continue to inspire. I love your spirit, and I love you! Kathy Robinson Dear Kate, My husband, Manny, and I met your Mom and Dad in the early 90's. We were in a couples group with them. We spent one night a week, as a part of this group, for a couple of months with two other couples talking about our relationships. Manny and I grew very fond of your Mom and Dad. Your Dad was always joking and making us laugh. Your Mom was serious at times and always smiling at your Dad. You could see the love that they both had for each other. They were friends and friends in love! What a beautiful combination! Someone suggested that at the end of each session we sing a song. Well your Dad suggested, "KUMBA-I." The rest of us knew the melody but not the words. My husband, who is from Cuba, had never heard of it! We were able to get the words to the song and we all learned it by the end of our group sessions together. To this day, whenever we hear "KUMBA-I" we think of your Mom and Dad. This time was before they were married and before they were blessed to have you as their beautiful girl. Our lives have gone on separate paths but we always remember your Mom and Dad sitting across from us during our sessions and could feel the love that they both shared with each other and for the rest of us in the group. Very, Very, special people! Kate, please remember this little story and how your Mom and Dad knew that marriage and relationships takes two. Two people who are friends and love each other unconditionally. An unconditional love that was formed from the beginning of their relationship to this day. as a husband and wife and parents to you. You and your family are in our prayers! Fondly, Susan and Manny Regalado Dear Dr. Debby Harris, I want you to know that I will always remember with respect and gratitude your professional involvement and help to advance my son to the elementary gifted program and curricula at Talbot Elementary. My son did not project his skills sufficiently in the second and third grade level to be automatically entered into the gifted program. Your careful and professional evaluation and assistance allowed him to enter the Talbot gifted program. The results of this advancement I can only speculate at this time, but I can inform you that he advanced from Talbot Elementary to the Lincoln Middle School Lyceum program. The Lyceum program is very demanding, yet it is very enriching. He is now in his second year of the Lyceum curriculum and as a seventh grade student, he just recently received a second place award in the school science fair for the engineering category. He says he would like to be an engineer like his Dad. We hope that he will compete this year in the state science fair competition and win his category like his older sister did as she won a first place at the 2008 State Science Fair for Environmental Science. I believe I can safely assume he will be admitted in two years as a ninth grade student to the Eastside High School International Baccalaureate (IB) Program. I think I can safely assume that my son will complete the IB program and from there, only the sky will be his limit. I expect that he will likely continue on to advanced technical studies, maybe at the University of Florida, or even perhaps to my places of study, Purdue University and the University of California at Berkeley. I will always remember you and give you full credit in my heart for your crucial and timely involvement in opening the education path that will ultimately allow my son to achieve his dreams through higher education and hard work. Respectfully and sincerely yours, Steven A. Yeats P.E. Dear Debby, Hello from an old friend! As we approach the Thanksgiving holiday, I am reminded of many people who I am so thankful for in my life – you are, most definitely, in the top tier! You are one of the life changers in the lives of the Hunter –Faulk family!! Do you remember when I called you in my “panicked-mom” mode because Stevie didn’t score high enough to be considered “gifted” at Hidden Oak???? You spent at least an hour on the phone with me that day. You carefully and methodically explained the whole “exceptional student education” process to me, and gave me guidance on how to proceed with school administrators. Knowing more about the process was hugely helpful, but I have to tell you: it was the loving way you delivered the information that impacted me the most. I felt so blessed to have been led to you, because you didn’t just deliver a clinical assessment and professional advice. You spoke to me mom-to-mom. You guided me through a process where someone told me “your child isn’t good enough” – hard for any parent to hear – to a point where I was prepared, confident, and empowered to advocate for my child. And then, after the public school process played out, we came to you for testing. And I can’t tell you how wonderful it felt to hand Stevie off to you during those appointments, knowing that no matter the “results”, my child was in the loving, competent, caring hands of my friend, Debby Harris. I always looked forward to the time when I’d bring C.J. in for gifted testing, too! But that child, from an early age said, “No! I don’t want to be in gifted, Mom!” So far I’ve given in, and haven’t pursued it, but rest assured, you are the first person I’m going to call on for advice when it’s time! She’s pulling straight A’s at Ft. Clarke (6th grade), and tells me that school is boring, so I think I need to kick it up a notch or two for her…what do you think? Kate can weigh in on this, too! Should I let her go along and enjoy the pace, or make her face some bigger challenges in advanced placement/honors courses? I have to say, too, how much I enjoyed our interactions at church – I’ve become less active in the church the past couple of years, but I remember how heartwarming it was to see you, John, and Kate on Sundays. Well, enough for now…here’s a picture of the girls from the first day of school. With love and much affection, --Judy Hunter C.J. – age 12 (6th grade @ FCMS) Stevie – age 16 (10th grade @ BHS) I wanted to write a small note - to Kate, to Debby, and to John, to say how much Debby touched my life. When I first moved to Gainesville and ended up in Debbie's classroom, I was a terrified 15 year old (an only child) who had previously attended a tiny private girls boarding school in Pennsylvania. I was overwhelmed and a bit shell-shocked, having left all my friends up there when we moved down to Florida. I barely knew anyone, and as a fairly shy kid (especially in these new surroundings) I was really scared. Very soon after we arrived in Florida, my mother was also diagnosed with a very agressive form of cancer - so I was also dealing with the possibility of losing a parent - without a well established support network in place (since we were so new to the area). So much of that changed because of Debby. Thankfully, my compassionate and lovely parents helped get me out of the huge public high school and into PK Yonge. As soon as I arrived, I was touched by Debby's grace when (lucky me!) I became one of her 'Arete girls'. She believed in me when I didn't believe in myself. She gave me a sense of place and purpose, where I was instantly accepted and where she, from the very beginning, offered me a safe and treasured place to learn, and grow. She introduced me to amazing people who looked at the world the same way I did, who really wanted to excel and dream and make the world a better place. Where being a smart young girl was encouraged and celebrated. In her class, I found new friends - incredible girls that (I know for certain since I am still in touch and friends with many of them) turned into truly phenomenal women. In her class, I found a community of like-minded people who wanted to be challenged, who wanted to achieve and wanted to THINK and question and dream. Debby made that happen, and was the gentle hand watching over all of it. In the two years I was in her class, I learned to trust myself. I learned that being smart (being gifted) was a wonderful thing. I learned that hard work mattered, and that there were wonderful people (both young and older) who would be there for you in a time of need, in a time of joy...and even in a time of agony. I remember my dear friends - who on my darkest most terrified days when my mom was so sick - would always be there, would help me still help me maintain a sense of normalcy and would laugh, cry, or just sit with me depending on what the day brought. Who were my constants through such difficult times. And it was because of Debby that I had this amazing community of people. Debby was there when I most needed her - and supported me through each and every day. May none of you ever ever doubt the impact that she had, and still has, on the students who love her so. Today, I have two degrees - my undergraduate degree from Bates, my graduate degree from Emerson. I am successfully doing what I love - acting, producing, editing, writing, and working on documentary films. And I know for sure, with absolute certainty, that Debbie's love, support, encouragement and strategies for success...her belief in me and the way in which she taught me to strive...the way in which she taught me to dream big, and believe that ANYTHING was possible...all of those things are part of why I am where I am today. Kate...sweet girl. You don't know me at all , I know. But I know it's really tough to see your mom fight an illness (it certainly was for me and I was older than you are now when my mom got sick), and I am thinking of you and sending you all my love in the world. Your mom is a truly EXTRAORDINARY woman - a woman who gave me wings and helped me fly - and from what your Dad has told me and the pictures I've seen of you (and knowing you are Debby's little girl) I am quite sure you are also an EXTRAORDINARY young lady. And if there's ever anything I can do to make things easier for you, stories you want to hear about your mom and how totally amazing she was to me when I was in high school, you need only give a call or drop an email and I will be there for you in a heartbeat. John, I know there's nothing I can say to make this any easier - but I am thinking of you too and sending love. And Debby. You are MAGICAL. You change lives (mine and I know so many many many others). I am thinking of you. I am sending you all the love in the world. I wish, I so so wish, that you weren't having to go through this, and did not have to deal with this horrible disease. I wish I could fix it, change it, and make everything better. Please know how much of an inspiration you are now, and have ALWAYS been to me. Your spirit, your joy, your incredibly positive and uplifting outlook on everything is infectious and I want to have the same outlook too. You are the most extraordinary person - and you have touched my life in the most wonderful ways. Please know that you are in my heart, now and always, and I am sending you love and strength and hope, and joy. You have helped me find all of those things in my own life, and I am so very grateful that our paths have crossed. With love, gratitude, and admiration - Meagan Meagan Hawkes www.meaganhawkes.com meagan@meaganhawkes.com Dear Kate: I have known your mom since I was a young girl. My family is friends with the Lettses (is that how you make Letts plural?) and I am about the same age as Sophy. I got to know your mom best when I was a bit older and we both attended the University of Florida. Once in a while, we would share a roundtrip ride from Gainesville to Palm Beach. We both married and started planning our families around the same time. I remember so well a time in Dotsy’s house when Debby told me that the doctors had stated that her that her eggs were too “old.” I was a few years younger and still cranking out eggs regularly so I offered to donate my eggs to Debby (I hope that you have had the birds and the bees conversation with your parents, if not, give me a call and I will explain). We had a good laugh about it because Debby and I share so many distinctive features – being tall, unruly hair, powerful thighs (powerful is a euphemism), love of sports and animals, and intellectual curiosity. It turns out that she did not need my so suited eggs as she found you, perfect Kate!! Fortunately, I have had the chance to meet you a few times and maybe you remember when we all visited at the same time in Palm Beach for Thanksgiving. I am guessing that it was 2006 or so. My parents live next door to the Lettses. My daughter, Paige, is almost the same age as you and the two of you enjoyed each other very much. Kate, I know as a friend of Debby’s and as a daughter and mom myself, that your mother’s love will give you warmth, comfort and courage for your entire life. It always will be with you. I just have to think of my daughter and son to feel better no matter where I am. I also just have to think of your mom, Debby, to make me smile. She has that effect on so many. Her warmth and easiness have always been a welcome sensation that can sling anyone out of a down mood or away from unnecessary negative distractions. You will not find people like Debby everyday, but when you do, surround yourself with them and cherish them. I know that you have been blessed with a mother who loves you beyond your wildest imagination. You will know this for sure when you have children of your own. Her love also brings out the love of so many more and you have an expansive “family” of amazing women in your life. Treasure your mother and family and know that you too are so adored by so many. All my love, Amy Van Andel John, I sent Debby a note about this early on, but I wanted to send it to you for the book of rememberances that you are putting together for distribution at Debby's memorial service after she passes. Debby has touched many lives, personally and professionally. We have not had the pleasure of knowing her very well personally, but we have benefited greatly from her kindness and professional expertise. When our younger son, Brian, was in middle school, he was not performing academically as well as we thought he should. As time progressed we suspected some kind of learning problem and eventually sought out Debbie to do an evaluation. Brian, as many of her clients were, I suspect, was not a "voluntary" participant. But, she got through to him and produced a thorough and extremely helpful evaluation. As a practicing Psychologist I can say that the evaluation was superb and, more importantly, it was very, very helpful to Karen and I. We were able to better understand much of what was going on with him in school, and, I think, be more effective parents. Brian was not exactly receptive to the results, but in the long run I think it helped him gain a better understanding of his strengths. I remember how helpful Debbie was to us as parents and how relieved we were to get a better grasp on his learning processes. I know that this story can be repeated, probably hundreds of times by different sets of parents and kids. Debbie has played an important and significant role in many, many lives. We are off to Vermont tomorrow to visit Jeremy and his family - they just had a new baby boy. We send our love to you and Kate and to your extended families. Jim and Karen, James Archer Jr., Ph.D., ABPP Professor Emeritus, Counselor Education University of Florida 352 375-6669 jarcher@coe.ufl.edu Dear Debby, We spend a lot of time thinking of you and praying for you these days. We feel like we really owe you. You made such a big difference in our family. We care very much about you and we feel very warmly toward you. You are loved by our family and by so many of us in the community. You have touched many lives and your finger prints are all over our family. Dr. Harris, we are very grateful for you. Warmly, Karen Debby, It's Adam! It's been a long time since we last talked. I understand that, for the time being, we wont get to "talk" with each other in the traditional sense, but we certainly can catch up.... I took the Florida Bar in early February 2008, without accommodations (my request was denied), and passed! Sure, I ran out of time and left a tremendous amount of questions unanswered, but I passed. Immediately following the Bar, I was offered and accepted a position as an Assistant State Attorney in Key West. It wasn't what I thought I'd be doing, but it has been a great job, so far. I work in a tiny office with a bunch of really down to earth people, and feel great going to work everyday, even though it is a 9-5 job at a desk :) Come on...it's a desk in an office in Key West...not bad. I would never have been able to find my way and be where I'm at without your help. Aside from what you did on a professional level, I feel like I can finally, as an adult (yikes) appreciate the support and kindness that you projected my way. That good energy has been resonating forward and I've called it up many times throughout the last few years. When I left UF without a degree and worked various jobs in Miami, when I re-applied to UF, when I was really struggling in law school, and again, after I graduated and studied for three months straight for the Bar, I would always think about being in your office and your energy - about sitting and talking with you - and things would fall into perspective. I could measure, in time, my progress. That's why it's great to check in with you and let you know where I'm at, because it gets me in touch with the memory of that confused little guy that I was ten years ago and I remember the help and support you gave him. I'm still a confused guy, but when I need to focus and make big decisions and get something done, I always always always think of what I learned with you and your desire to see me be happy. Thanks Debby! I hope to talk with you soon! Love and best wishes, Adam G. Dear John- "I am at a loss for words; I am not sure about a lot of things in life, but I do know this. Few people, that have lived an entire lifetime, have been able to share the love that you and Deb have shared during your time together. She will ride to heaven on angel's wings with a mission to look down and protect you and your daughter from the cruel world we live in. God bless. " Rick Orem Hello! My name is Kathleen Gelatt-Nicholson and I was a student of Debby's while I was at P.K. Yonge (I graduated in 1986). I went to her Women's Studies, was in the gifted program, and visited her apartment often for meetings. I remember those days fondly - it was the days of many opinions, ideas, and young spirits. Debby was a major inspiration to me and made me, certainly, the woman that I am today. I went on to graduate with my B.S. from the University of Florida in only 3 years, went to veterinary school at North Carolina State University, did a year of work out in private practice in Orlando, FL, and then did a radiology residency at the University of Florida's College of Veterinary Medicine. I am board certified in Veterinary Radiology. Since then, I worked at the University of Minnesota for 4 years, then in private practice in Cleveland and Akron, OH for 4.5 years. Recently, I have moved back to the Gainesville-Ocala area. At first, I worked at the University of Florida's College of Veterinary Medicine in the Radiology department for 2 years. Recently, I decided to start my own private practice radiology business. I rove around the Gainesville-Ocala area to the numerous practices and perform ultrasounds (on dogs, cats, and exotics) as well as perform film reading sessions with practitioners and read radiographs for practitioners. I love what I do and would not change a thing! I'm married (I've been married to my husband Mitch, an electrical engineer, for over 11 years) and we have a son Nathan who is 7 years old (attends Gainesville Country Day School). My parents live in your neighborhood (Spring Forest) and I was devastated when hearing about Debby! She was always such a vibrant, compassionate, and caring person! I am so sorry to hear of her current difficulties - I would love to come and visit sometime. I really love Debby and think the very highest of her - I wish I had known earlier about her disease. She is a very strong person and I know that this has been hard for her. I just wanted to let you know what she means to me. I know she is going through a difficult and hard time. If you need anything or want me to come visit, please let me know. You can reach me at gelattka@yahoo.com or cell 352-316-5039. Take care! Kathy Gelatt-Nicholson John, Here is a contribution from George and me about what Debby means to us and our family for your collection. Debby was a tireless advocate for both of our children, helping us “fight” the school system in order to do the best for them. Benjamin was not doing well in middle school, having difficulties coping with the transition from one class in grammar school to many classes in middle school. Debby counseled him, got him together with a male “organizational” counselor, and tested him for learning disabilities. When she found that he would need accommodations on tests, we arranged a meeting with Ben’s teachers to explain this. What was unbelievable was that Debby came to that meeting (as Dr. Harris) and carefully explained to the teachers what Ben needed. Yes! On the other hand, our daughter Sarah, when in grammar school, kept insisting that she should be in the gifted program. The teachers didn’t think so, as although Sarah was doing well, she was not doing exceptionally well. We brought her to Debby for testing, and she found that Sarah was at the 99th percentile on certain variables, but needed additional time to take written tests. With Debby as our advocate, Sarah was put into the gifted program at JJ Finley Elementary School. After that she continued to excel, and is now doing very well as a sophomore in the Eastside HS IB program. These small stories only show a small part of the contribution that Debby has made to our family, and to each one of us. Anne and Georg, Anne Kendall, PhD, RD, LDN, Food Science and Human Nutrition,University of FloridaPO Box 110370, Gainesville, FL 32611 352-273-3472 kendall@ufl.edu Hi John, I received your letter of November 14 on Saturday when we got back to Sea Ranch after a week in Charlotte, and have read it several times before getting to this. I can’t imagine what you and Debby and Kate have been going through. I have thought back a lot over the last year to your first emails on Debby (I believe last November from memory) and the ups and downs of hope and later acceptance of the developing reality. Two highly educated and aware scientific minds coming to grips with a terrible disease. The hardest part for me to understand – or at least relate to – is the incredible burden, both mental and physical, that this has brought on you. I realize that this has been pretty much a 24 hour a day reality for a year, and this is something that no one can walk in your shoes on. It seems from the information you have sent that Debby has faced all of this with incredible bravery, knowing that little by little her life is being taken away from her. That, I cannot even begin to fully relate to, I guess we all do at some point, we just don’t want to get to that point, but Debby seems to be fully cognizant of this. I am sure she really appreciates all that you have been doing for her, although this must be incredibly frustrating for her to be helpless to the progress of the ALS. And then there is Kate, for now Debby has to be your focus, but after her seemingly inevitable dying occurs, you will then have to expend whatever strength and emotion you have left, in trying to put all of this in perspective for Kate. To lose her mother at such a young age will have a major impact on her, to say nothing of the understanding that the genetics may be there for her too. I remember when I was about 14 I played in quartet in a piano concert (I hate to think what it sounded like I hated the piano) with 3 other boys, by the time we were about 21 two of the other three were dead, and I have no idea what happened to the fourth kid. I used to wonder later how it would have influenced my life if at 14 I was told that at least two of the four of us wouldn’t make 21! So watch Kate carefully, but let her grow and don’t protect her from life too much, just a steady hand on the tiller when she needs it. And, after you have had a chance to regain some emotional strength (which will take a while) you will have to turn to your own future without the love of your life and try to live life to the fullest again. Take your time, but take it eventually… Hang in there, your strengths are enormous, your weaknesses are normal, but let your emotions flow to Debby and Kate, and then find them for yourself. Very best regards, Alan John, Please put this in the book for Debby. When we think of Debby, a lot of wonderful images come to our minds. The images are of a woman who is caring, bubbly, strong, and generous. When Tricia needed some office space to see a few private clients, she generously worked out a plan for her. Her caring for Kate and John has always been evident and is beautifully recorded in the many pictures of the three of them together and smiling. Her strength of character has always shown through, but is clearest now as she works through a most difficult disease. Tricia and Fred, Tricia Gregory, MA, RD, Wellness Coach, Registered Dietitian, www.nutricia.org, 352-339-0458 Dear Debby, I want you to know that every time I see the field full of children flying kites at retreat, I think immediately of you. If I remember right, you were instrumental in turning kite flying into the much-anticipated tradition it has become. I often wonder how many other wonderful church activities you've started or improved; you have always had such amazingly creative ideas and the energy to bring your ideas to life! I miss talking and laughing with you at church. Please know that we're all thinking of you and that we're holding you, John, and Kate in our prayers. Love, Sara Kirk Dearest Debby, John and Kate, This is about you, Debby – my friend – Kate's mom – John's wife – and friend to so very many people far and wide, that it'd be easy to feel kind of insignificant in Debby's life were it not for how very special Debby makes you feel when you are with her. Seeing all these people touched in so many powerful ways by Debby – working with her, learning from her, playing with her, even now in this past year having the gift of traveling with her on this most brutal journey with ALS – is to touch something that feels like magic, but it really isn't. Debby has simply, consistently, doggedly grabbed onto some principles available to all of us, but all too often refused: a willful decision to set aside judgement in favor of joy and connection, the wisdom to wholeheartedly embrace life and every person and experience it brings, and the determination to leave every situation better than she found it. Thank you for that, Debby. Of all the people we met when we lived in Florida, Debby and John reached out to us more than anyone. You went out of your way to make us feel welcome, like we were already good friends before we hardly knew each other. Debby and John believed we'd be good friends and you made it happen – that's just who you are. We had really good times together (especially at a certain Peter Pan Birthday Party) right up until the Schert-Harris family organized and hosted our going away party – we felt so loved! I believe that party was meant to strengthen our bond so it could stretch all the way from Gainesville to Eugene, Oregon, and last for years and years! But you guys didn't stop there... you even came all the way out to Oregon, and out on our old boat. That was really, really fun and a very special trip for us. Of course, I can't thinking about Debby, John and Kate without thinking about the absolutely incredible time I had with your family this past September. For months, I'd been reading John's really, really tough emails about what Debby and all of you were going through. I had become (and remain) ever more touched by Debby's positive, strong, faith-filled optimism and John's gritty-humorous-loving-genuine presence through all of this. The way you have opened up your lives through this journey for all of us to share is a rare gift indeed. Still, it was so hard to imagine, even harder to let it remain abstract and distant... And you let me come share your lives for four very intense days. There's all the simple things most of us do every day without thinking (or gratitude!) – brushing teeth, swallowing, just saying something, getting comfortable in your chair, coughing, eating, going to the bathroom, showering, dressing, and on and on. And each one of those things took time, intentionality, ingenuity, and energy, not to mention cooperation, humor and patience. Each one of those things ceased to be about getting the job done and more about the moment itself. It was exhausting! It was as real as it gets. It was all joy and hope and frustration and anger and dogs and cats and photos and equipment and drool and laughter and jokes and hugs. Your family has a unique honesty that I absolutely love. Here's the one thing I absolutely most LOVE about Debby – you graciously, fearlessly can see in each person both strengths and weaknesses. That in itself is a gift, but even more so because you don't use your insight to judge or compare (as most of us secretly do!) but simply to help each individual acknowledge the best in themselves, understand their challenges and find some way to make it all work! Debby, you notice a lot of positive things about people that they often don't see in themselves. You treat people as if they're already capable of things they themselves don't know they can do. And then people start to feel better and act more boldly and actually believe the things about themselves that Debby saw long beforehand. It's not like Debby ignores bad things - she simply chooses not to dwell on them or let them be a show stopper. Even this ALS thing – it's EPIC, as Ben might say. Debby could have chosen to get depressed and feel sorry for herself. A lot of people do, and there's certainly more than enough to be angry or sad about what's been happening. I know you guys have dark moments with this, within yourselves and with one another. That's real, and really okay, but what amazes me is how you have lived through those feelings with honesty and not stayed stuck there. Debby and John, you could also have been afraid to ask for help, to invite so many people to fumble our way through trying to do SOMEthing to help, to share the journey. But Debby, you've taken on this ALS with incomparable hope and determination. The ALS has kept taking things from Debby - your lovely voice, your strong and graceful movement, your control over the kitchen and meals (a wellspring of so much hospitality and love)! But ALS can't ever take Debby's courage or hope, it can't take your wonderful ability to see the give-and-take in life, it can't take your hugely open heart. For each and every one of us, our voice will fade, our bodies will fall apart, and certainly control over anything is always something of an illusion! Most people don't deal with these challenges so early or so dramatically, but we all get there eventually. Still, that's not and never was who we really are in the first place – we are actually nothing more (or less!) than that day-by-day accumulation of what we do with and for one another, and no disease or even 'ordinary' aging can ever take that from us. And Debby, what a mountainous pile of determination and compassion and joy and love and hope you are! Debby, I don't know how you do it – you can't lift a finger right now, but you exude strength. Even when you cannot speak in your own voice, you're telling us day by day so many important things about how to live. At a time when you could justifiably feel like a victim, you still take charge and choose how to live each day. I am learning so much from you. I love all three of you very, very deeply. My candle is lit for you. much love always, ~ Kirsti Haugen Dear Kate: I have known your mom since I was a young girl. My family is friends with the Lettses (is that how you make Letts plural?) and I am about the same age as Sophy. I got to know your mom best when I was a bit older and we both attended the University of Florida. Once in a while, we would share a roundtrip ride from Gainesville to Palm Beach. We both married and started planning our families around the same time. I remember so well a time in Dotsy’s house when Debby told me that the doctors had stated that her that her eggs were too “old.” I was a few years younger and still cranking out eggs regularly so I offered to donate my eggs to Debby (I hope that you have had the birds and the bees conversation with your parents, if not, give me a call and I will explain). We had a good laugh about it because Debby and I share so many distinctive features – being tall, unruly hair, powerful thighs (powerful is a euphemism), love of sports and animals, and intellectual curiosity. It turns out that she did not need my so suited eggs as she found you, perfect Kate!! Fortunately, I have had the chance to meet you a few times and maybe you remember when we all visited at the same time in Palm Beach for Thanksgiving. I am guessing that it was 2006 or so. My parents live next door to the Lettses. My daughter, Paige, is almost the same age as you and the two of you enjoyed each other very much. Kate, I know as a friend of Debby’s and as a daughter and mom myself, that your mother’s love will give you warmth, comfort and courage for your entire life. It always will be with you. I just have to think of my daughter and son to feel better no matter where I am. I also just have to think of your mom, Debby, to make me smile. She has that effect on so many. Her warmth and easiness have always been a welcome sensation that can sling anyone out of a down mood or away from unnecessary negative distractions. You will not find people like Debby everyday, but when you do, surround yourself with them and cherish them. I know that you have been blessed with a mother who loves you beyond your wildest imagination. You will know this for sure when you have children of your own. Her love also brings out the love of so many more and you have an expansive “family” of amazing women in your life. Treasure your mother and family and know that you too are so adored by so many. All my love, Amy E. Van Andel, DVM, MPH, Drug Regulatory Affairs, Boehringer Ingelheim Pharmaceuticals, Inc., Phone: 203 798 5452 e-mail: amy.vanandel@boehringer-ingelheim.com Debby, Reading through these entries I can see that I have missed out on knowing you better! We met this summer for the first time, I believe, in the UCG Memory Garden. (We talked about your hope to connect with Beree Darby a little and I hope that you were able to reach her finally. I put in some word on her voice mail after we talked!) In what sounds like a classic Debby move, the conversation such as it was turned to me and my kids. You were generous with your enthusiasm and advice for how to navigate the Gainesville school system. The quality of your presence since we met that day has stayed with me and I can imagine the impact that you have had on so many lives through your friendships and work. I also have a sense of you through John, whom my son Liam and I met years ago while flying Kites at a UCG retreat. Generosity and enthusiasm appear to run in your family. How wonderful! We learned some about flying kites that day but more importantly got a lot more excited about doing it! My children have also been blessed with Kate's House on the playground at Flowers Montessori School. My thoughts, prayers and love I am sending to you, John and Kate for continued enthusiasm, fun and strength as you all make your way through this time. I have such admiration for all of the warmth and openness you bring to life and your fellow travelers. Through meeting you and hearing some of your stories, I am so deeply touched and changed, really. Isn't it amazing how simply and profoundly we can transform each other? Lots of love to you, Kate, John and all of your wonderful friends and extended family. Fondly, Kristin Wolcott Farese Dear John, This is not an end but a new beginning without pain or suffering Love Cindy Dr. Cynthia J. Ekstein, Program Director, National Science Foundation Chemical, Bioengineering, Environmental and Transport Division (CBET) voice 703-292-7941 email- cekstein@nsf.gov Hi John, So sorry I've been slow on this! I'm writing from the plane taking me back from Dakar to home, to pick up Kirsti and the boys and then head back to Senegal on Dec 4. Will keep you posted on the adventure....Big hugs to all, Dennis How we got to know and love you Debby, John & Kate We got to know you Debby (and John!) through you, Kate: you and Ben, same age, were buddies, first through UCG, if I remember right. You and Ben were always kind of cut from similar cloth, sharing the same sense of mischief and adventure, with lots of hours in a pirate ship in your back yard and on that epic zipline. So we first got together through our kids, and that was when this bundle of energy and laughter and warmth called Debby Harris entered our lives. When I think of you, Debby, I see a quirkiness, a sense of the hilarity of life. To me, you're s a person who finds mirth in every situation, and when it's not there to find, you make some yourself. From the kids testing the limits of trouble with mud or paint, to John's latest whacky scheme, to scissors as crucial tableware, to flying fish in Pike's Place Market, the joy and humor of all kinds of situations never escapes you, and you pull it out and celebrate so other people can share it too. I can hardly think of you without thinking of your big smile and your welcoming, unfettered laughter. And then you also took us all in as your family -- Kirst, Ben, Sam and me. We were kind of newcomers then, but not for long, because you opened your heart and home to us so much that we felt cousins, at least. Unconditionality, pure, unfiltered unconditional acceptance is what you radiated to us, and what you always send out into the world: no judgment, no assessment, no holding a little something back out of shyness or uncertainty or anything like that. I think you drew us to you, and you always draw people to you, because people can sense the safety, acceptance, the warm embrace you send out into the world. That's a really special gift, and it's an inspiration to those of us (like me !) who are not so good at it. It came out a lot, from what I saw, in your work, which touched our lives right before we left Gainesville. What you gave us then was such an amazing insight, such a lifelong gift really, that has guided us in very very useful ways as we've navigated the last nine years or so of change, development, new ups, new downs. You gave us a road map, and it was a marvel, because it took you no time to map out and explain the situation in a way that went past diagnostic lingo into a really deep, empathetic feel for what was going on. I hope you know how much that meant to us, and has continued to mean over the years. When we moved to Oregon in 2001, after four years in Gainesville, you threw this amazing going away part for us, the night before we hopped in our car and drove west. All out best friends were there -- everyone welcome. It was an incredible time to feel so loved. It was poignant to leave that circle of love. Ben recently told us that he thought that party happened to distract him from how sad he was [at age 5!] to be leaving home and his friends! Looking back, we made the right move for us to come closer to our families while Ben and Sam were still young. But that didn't make leaving such good friends like you any less hard. We've missed you so much over the years. And you gave us another gift within a few months of that move, coming to stay with us during our first Christmas out West, meeting or families and even sharing some time out on the old boat on Puget Sound, the Lady K. Unforgettable memories woven into an unforgettable friendship -- thank you!! With lots of love, Dennis Galvan John- When I left Debby's Hospice room tonight she seemed to finally have reached a comfortable place....with the temperature, her position on the bed, her blankets, her pillow, her computer table, the lights and the face clicker to call the nurse. For each thing that was accomplished all of us in the room got a smile. Her smile was contagious.... Before I even read this message from you below I received the greatest pleasure giving her a foot massage. I told her just type an S for stop... She didn't type an S :) I read many of the printed out messages by her printer and could feel her fears.... most of all that she didn't want to feel abandoned. I don't think tonight she felt abandonment... At least when I left with the bag of pictures she looked serene and I so enjoyed being a part of that. I had just come from the Citrus Memorial Hospital in Inverness where a very dear friend in her late 70s was in Hospice for cancer and total kidney failure... Like Debby she has all of her mental abilities....but she could still speak. My heart is full as a write this....and thankful to have the opportunity to have even a small part in the lives of others and make them smile, even if only for a moment. I'm glad you're getting a little respite. My step-dad went through this very thing with my mom. There's got to be a good balance of caregiving by the caregiver. I'm glad you feel you can reach out for help. My plan is to scan these picture tomorrow and add them to the video project. One of my colleagues says he knows someone who does websites ....if you send a brief email to Bill Beckett at bbeckett@wuft.org and tell him you'd like to know how to reach that guy he will follow up. Donna Green-Townsend Debby: As you know, I work as a journalist. I've spent thirty plus years at my career using words to tell the stories of thousands of people across the country. But somehow, it has been so hard to put down words to express how I feel when I think of your courage this past year. You are an AMAZING woman, absolutely AMAZING. Your courage and attitude have continually lifted my spirits and attitude toward life. I have a little saying posted on my computer that says, "Life is a journey, be in it." Whenever I read it, I think of you and your family. You are so blessed to have such loving family members and so many friends. More importantly, they are all blessed to have you in theirs. As you have been on this tough journey this past year I have also been one of a different sort with my mom. I have often shared with John how difficult it has been to watch my mother deteriorate from Lewy Body Dementia. She took has lost so many bodily functions. She used to walk five miles a day well into her 70s, but quickly after her diagnosis she lost her ability to speak and walk. It's been a three year journey so far. What it has taught me is to take each and every day to live life. Though she can't speak to me, she acknowledges me with her eyes and small utterances. That acknowlegement is precious to me. What I continue to do is make music cds of her favorite songs and more importantly little video movies with family pictures and music which she has watched over and over and over with such enthusiasm and recognition. She is in a nursing home in Missouri and so that's one way we have been able to communicate. I told John I wanted to do this for you too. I'm bringing you a DVD today with music and pictures John provided. I hope it is something you can watch and listen to and make you smile. Going through these pictures of your life certainly made me smile as I can see how you truly like to live life to its fullest. Much Love To You Debby and your family- Donna Green-Townsend, WUFT-FM/ WJUF-FM, Features Unit Executive Producer, University of Florida Dear Kate, I have been a friend of your mom for a very long time, before your dad even. We always have had a great time together as our lives wove in and out of each others. There weren’t many people involved with gifted children back in the 1970’s. Your mom and I met and hit it off instantly. We felt like pioneers in the field. We shared curriculum and discussed student needs. We traveled to conferences to hear the experts speak and also to present our ideas in front of our peers. Your mom, the extrovert, would net-work with everyone. As more of an introvert, I’d take long walks outside and return to the conference center refreshed. She’d fill me in on all the new ideas and gossip. Your mom started Super Summer and enlisted me to teach classes for many summers. It was always easy, because she insisted that it be creative and fun! When she taught adults about gifted education, I came to speak to her class. We had a give and take relationship, learning from each other and laughing a lot. As the years went by, our circle of friends sometimes overlapped. We would see each other at parties and events around Gainesville. During that time we both moved a couple of times to different houses and apartments. Your mom always created a cozy nest wherever she lived, surrounded by the color blue, flowers and wonderful art. Our lives were busy. She worked hard on her PhD. We made dates to take long walks together after school, a time to share our lives and dreams. Your mom was so happy when she finally met your dad. She knew he was her match and he felt the same. He was a partner that would walk through life shoulder to shoulder with her. He shared her passion for life, her spirit of giving, her warm energy and light. He was ready for adventure and so was she. Their wedding was beautiful. They both wanted to start a family. Their people net-work found you. What a special moment that was! You were perfect! You brought such joy and love with you. Again, your mom and I took walks, this time with you in a stroller. As you grew from babyhood to school age, my life went through some changes. I didn’t see as much of your mom. She was busy being a happy mother and professional. I was teaching and growing gardens out in the country. You don’t have to see someone a lot to stay friends. We both knew we’d pick up where we left off when we saw each other again. When I turned sixty, I threw a big party to celebrate. I invited friends from over the years and of course, your mom and dad were on the list. Your mom was radiant, wearing pink, meeting and greeting, having fun. Last fall we reconnected again. She put out an email about driving to Jacksonville to hear Obama speak during his campaign. She drove, we both brought snacks, and we talked non-stop. We had a great day catching up with each other and being a part of the enormous crowd. The energy was amazing. This past year your mom and I walked on the prairie in the spring, shopped for school supplies and health food in the summer and visited at home in the fall. She introduced me to warm and wonderful people. She continued to be an amazing teacher and friend. Courage and grace radiate from her. It’s not an easy path she’s on. But, because of that path, I’ve gotten to know you, Kate. That’s very very cool. It warms my heart. I know we’ll be friends for a long time. Love, Nancy Loeper A Short Recollection About Debby For Kate Hi Kate. I met your mom many years ago through my friendship with your dad, John. I’ve known John for over 30 years, having first met him when he and I were both working for a small firm called ESE, INC. in Gainesville. John was considered a really cool and interesting guy at ESE because he not only had a professional degree and could do environmental work but also knew how to work on cars and fix things and therefore had other marketable skills that many of us didn’t have. We both left ESE after a few years and went our separate ways, our individual careers taking us on different paths. But we ended up unexpectedly becoming neighbors years later when I moved back to Gainesville in 1991 and bought a house in Spring Forest where John was also living. He and I renewed our friendship and that’s how I ended up meeting Debby. My wife and I became parents just a short time before your mom and dad did. I used to bring my kids over to your house sometimes when they and you were all very young. I doubt that you remember that now. But I remember coming over and marveling at the interesting inventions and home enhancements that your dad had installed, such as a swing for you installed right in the middle of the living room that would swing out through the French doors and a cable ride that John had installed outside between two large trees. The indoor swing required that several very large and long steel bolts be drilled right through the outside wall of the house, which was something that I thought my wife might not be too keen on if I proposed it at our house. After we would go home after those visits, my son, Sam, would ask me when I was going to put a big swing in our house like the one that John had built for you. I’d give him the “Well, we’ll see, son” response, knowing that I would be unlikely to propose such a home addition. But one great thing about your mom was that she accommodated and accepted John’s penchant for building and creating the unexpected or unusual home enhancement. She also accepted his desire to buy and accumulate massive amounts of tools, chain saws, lawn equipment, shoe shine and repair equipment and who knows what other hardware that I don’t know about. In that regard, she was a perfect compliment for John’s personality. I remember talking to Debby during our visits to your home. I hadn’t had a chance to get to know her too well before these visits but she’s the kind of person that could talk and make conversation with anyone and we found a lot to chat about. We’d talk about the experience of being parents and raising our kids, the funny and interesting things that you and my children were doing, and the joy of being new parents. Debby being a remarkably articulate, humorous, and, of course, very bright person, I always came away from my visits having learned a lot and having enjoyed the visit greatly. With her background in psychology, I also would usually come away with some better insights into my kids. I had an opportunity a few years later to get to know Debby in a more professional role as a psychologist. As my children grew, it became apparent that our son, Sam, seemed to have a mind that worked a little bit differently than most children. One summer, when he was about 7 years old, my wife and I brought him to see Debby and asked her to help us figure out what it was about his mind that worked a little differently than other children. Over the next few months, we took Sam to see Debby at her office every week and she administered a variety of tests to try to determine what Sam was all about. Based on the insights she was able to reveal from her tests, we learned a lot about Sam and how to help him succeed in school. Taking Sam to see your mom was one of the best things I’ve done for my son. He’s turned out to be great student, making almost straight A’s on his last report card. I hope this short recollection helps you know how much Debby has helped various people through her life and what a great person she is. Much love to you and your family. We think about you often and hope for all the best for you. Dean Williamson November 21, 2009 I grew up in Palm Beach but moved to Kentucky at age 12. Bucky, Debby's brother was in my class at school. We had such a nice life as children. It was a small town, everyone knew everyone and watched out for everyone. We felt loved and free in such a warm and safe environment. Debby and I often reminisced about our childhood. Of Debby's "adopted" family, Sophy is my cousin and Dotsy is my aunt and Gavin was my uncle with the lovely brogue. Since being an adult I have managed to spend most every Thanksgiving in Palm Beach. Debby and John and Kate have too and it has been a highlight of our trip to catch up with Debby and her family each year. We have been doing this since before Kate was born and when my children were babies. It has been so delightful to watch Kate grow and develop, take walks with Debby on the Lake Trail, take a break from the Massachusetts weather and spend time in the sand and sun with Debby, John, and Kate. Dotsy loves to entertain, and as if Thanksgiving is not enough, Dotsy has her traditional Thanksgiving Eve festivities complete with dinner and talent show. I believe the talent show was started years ago when my son Noah was 5 (now 23) and played the cello (no longer, I'm afraid), Ethan started the talent show with an amazing monologue at age 3 (now 21) and eventually piano and then guitar. The Davidson's always managed enthusiastic skits, and while Kate was a little shy she had some great performances with Scottish dance and last year with her beautiful sax. It is so very hard to imagine that this past year was to be our last Thanksgiving with Debby! It seemed like another absolutely wonderful and perfect Thanksgiving. There were no premonitions of what life was going to hand out to my dear and wonderful and truly lovely friend and "cousin". I will miss you terribly this Thanksgiving. You are an amazing woman and I love that you have remained so upbeat and lovely through out all of this. It was a treasure the other day when you called me with your nose! We will be apart this year for Thanksgiving, but Debby you will be very large in my heart this year and every year. Thanksgiving will always hold fond memories of our time together. Love, Betty Wood, MD John, after reading all of these beautiful, beautiful tributes and stories, and your agonizing, poignant, loving reports, I feel totally inadequate and speechless. I do feel, tho, that I am getting to know an amazing woman and an amazing family because those who DO know Debbie and Kate - and you, much better than I do - have described so well how very, very special you all are. You are extremely blessed with all of your loving friends - but I always believe that ye reap what ye sow - and it is obvious that you all have given of yourselves tremendously and that the kindnesses and fun and spirituality and verve you all have exhibited have sown the seeds of the relationships from which you are now drawing strength and help. They will sustain you, too, in the days to come.... I send you all my admiration and my love, and hope that despite everything, you will find many reasons to give thanks this Thanksgiving Day. Margaret Boonstra John, Thank you for inviting all of us to share our good thoughts and memories for Debby (and you and Kate too!) Debby, I vividly recall the first time I met you Debby.....it was on a UCG women's retreat near Keystone Heights I think. I was relatively new to the church, and probably a little nervous as I didn't know many of the women there. I clearly remember sitting in a circle of wonderful women. We were going around the circle and I cannot recall exactly what we were asked to share, but I remember you asking us for prayers for you and John because you wanted to start a family. You were concerned about your age but were so excited about the thought of being a parent with John. I don't know exactly how you worded your request but it was something very funny....you had us all laughing hysterically. I thought you had such a great sense or humor and I so enjoy being around people who make me laugh. I still remember the picture you showed us.....it was your wedding day I believe. You and John were cheek to cheek and smiling so brightly. You both looked so happy. I did remember your prayer request. Sometime later I heard that you two were awaiting the birth of Kate....I was thrilled for you.....I know you were overjoyed! When I heard that Kate had been born prematurely I freaked out. After having Nick prematurely I was a worrier. I tried to think of something I could do and ordered those little preemie clothes. Kate did so well though, I bet she hardly wore those tiny things! I was so happy for all three of you! I've enjoyed watching her grow as my own boys have grown up at UCG. I also remember a UCG all church retreat when you planned all the preschool activities. We took a walk on Saturday afternoon because neither of us wanted to go to a seminar....again, I think you had me laughing hysterically. :) Debby, I have always admired you! You are bright and funny....and I think the world of you. I wish I could understand why you got ALS, and you and your family have had to endure this difficult journey.....it breaks my heart, but again I look at your pictures and still see that bright, vivacious Debby....a glow that even ALS cannot dim! Love, Trish Thoburn Dear John, I am so moved by your posting, I cried while reading it. I am praying for all of you for God’s strength. I was hoping to find something encouraging facts and news in the German literature for you, contacted some friends about alternative or new therapies – but there are none. I am so sorry. I had not had the courage to tell you this earlier – which is indeed ridiculous in light of what courage you and Kate are showing. I want to let you and Kate know that my thoughts are with you all very often, and I mean this honestly. I am not a big and good letter writer but I wanted to let you and Kate know that my thoughts are with you. Kate, you are such a wonderful daughter, for your mom and for your dad. I can only imagine what it must mean for your dad to have you by his side in this situation, and that is a God’s gift for him. I know that your father is a gift to have in these troubled times for you as well. I admire your courage to go through this experience. I have a daughter myself and cannot think about what it means to go through what you are going through. I do know for sure that it would mean the world for me having my daughter at my side in difficult and unimaginable times. Anja, my daughter, participated in Super Summer; the program your mother has initiated and led so many years. I am very grateful that Anja was able to experience that learning with equal minded kids can be so much fun, and I am sure this experience (and hopefully the Super Summers to come, which will be associated with your mother) will have shaped her attitude towards learning and having fun at the same time. Kate and John, I hope that you can feel the thoughts and prayers that are with you from all your friends and from people like me who did not get to know Debbie personally but who are impacted by her good work – and by her attitude. Her way of living these days will be an example for me by which I will try to make it through good and bad times. Be God’s spirit with you all - all the time. Stephanie Wohlgemuth. A UCG member. My thoughts and prayers are with you and your family. I'm praying for a miracle for you during this trying time. Your church carries you in prayers and thoughts daily. Hang in there with grace. Our arms surround you. Nancy Wise, UCG Hi John, My heart (and the rest of my family’s heart) is with you and your family. I would like to share this poem with Debby and you. Love & Peace my friend. Ramin Yazdani, Yolo County Solid Waste Department, California What Was Told, That by Jalalu'l-din Rumi Translated by Coleman Barks What was said to the rose that made it open was said to me here in my chest. What was told the cypress that made it strong and straight, what was whispered the jasmine so it is what it is, whatever made sugarcane sweet, whatever was said to the inhabitants of the town of Chigil in Turkestan that makes them so handsome, whatever lets the pomegranate flower blush like a human face, that is being said to me now. I blush. Whatever put eloquence in language, that's happening here. The great warehouse doors open; I fill with gratitude, chewing a piece of sugarcane, in love with the one to whom every thing belongs! Dear John, I met Debby many years ago at the library downtown when she would bring Kate to storytimes. We spoke on several occasions and she seemed like an amazing and accomplished woman. I remember Kate as a little girl at storytime, cute and curious. I joined UCG with my family a couple of years ago, but we typically don't attend the services anymore. I am glad however that I got your emails about Debby. You are documenting an amazing journey in such a loving way. I wish you, Kate and Debby love and strength along this journey. Your strength is formidable. Best of luck to you. Be Astengo "Love is all you need." The Beatles Hi Debby, (and John and Kate), Today I'm feeling irritated at myself. Why? Because I didn't make the effort to get to know Debby better - but I'm holding out for that miracle for your recovery so I can redeem myself. So why am I writing if I didn't yet have the opportunity to get to know you better? Well, because despite that, I do have very vivid memories of you. They are of someone who seemed always to be smiling, always had a look of engaging in the world, loving it, and seemed to be just barely containing yourself from jumping into that next interesting idea. There was always something about your face that brought a smile to mine. One look at it and one knew you would be a good listener, and someone who could be trusted to go to with a problem. All that from just seeing your face so many times at UCG, and the few times we did exchanges "hellos" and a few words at church or retreat. And all that before ever realizing all the wonderful things you accomplished and the large cadre of friends you had. That, of course, only came from your website, so I'm very grateful to John and you for producing that and being willing to share your stories and those of others who knew you better than I. None of those accomplishments surprised me in the least as I read them. I knew it all already from just that face, that posture, that bubbly way about you. The wonderful letter just filled in the details for me. So, Debbie, this is just my way of trying to redeem myself - to go beyond that "hello" and brief greeting. Please know you, John and Kate are all in my thoughts and prayers and that I am counting on that miracle! Remember you touched many lives without even knowing it. Keith Berg, Ph.D. Professor Emeritus, Department of Psychology, University of Florida, Gainesville, FL 32611-2250 wkberg@ufl.edu Dear Kate, Here are some things I remember about your mom from when we lived next door to you. In about March of 1997, she was in your driveway and I was in our yard, so we spoke across the bushes. I knew that she and your dad had been trying to adopt a child, and she told me that they had found a young woman who was pregnant with a girl, and who had agreed to let your parents adopt her. She said the child was due in mid June and that they were going to name her Kathryn and call her Kate. I said, "Really! I am pregnant with a girl who is due in July and we also plan to name her Kathryn but call her Katie." I thought it was especially quite a coincidence because we already had 2 common names between our families, with our son John and your Dad, and me and your mom both being named Debby (or Debbie).. Your mom was excited that we'd have 2 girls so close in age, right next door to each other. She said that she envisioned tea parties and such. Well, as you know, that girl was you, and you actually were born 2 months early. When you and Katie got old enough to play together, your mom was always so accepting of Katie, and would tell me the kinds of things she liked to do at your house - you had a lot of different kinds of toys and creative activities to engage in at your house when you were little. A lot of times, Katie would just want to relax in the swinging hammock that you had in the back room, but your mom was still accepting of her. Your mom was always very loving and kind, always had a positive attitude, and was obviously very bright, as I'm sure she still is. We hope to see you all the next time we are in Gainesville. Love, Debbie Charlesworth, for Dave, John, Michael, and Katie too Dear Kate, Just wanted to share with you about your mom. We met your mom in the late 90's and it was over in her old office parallel to 43rd street. I needed to get our son Chris tested for learning problems and attention problems he was apparently having in school and he was feeling stupid about himself and didn't want to go to school because of it. Chris and I went and sat with your mom and she was super to Chris and made him feel so welcomed and explained to him the things that she needed to do with him to see where she could help him. So she had him come in several times, as she took several little tests to see where Chris needed some help, and also, what he was gifted in... After all the education testing, she had his IQ and all the areas where we could start helping him. He was diagnosed with phonological dyslexia, which I think means he had a hard time processing information that was taught to him in school, from when he heard it to what it meant. He was smart, but just could not process the information in his brain from the teacher. Also, he was tested for his attention span... He has attention deficit and it is really hard for him to sit and read stuff in a book or concentrate on much in school. Your mom got us all together, Chris's dad, me and Chris and shared with all of us her findings on the testing. She gave us wonderful ideas to help improve Chris's learning and she also pointed out Chris's gifts. and how he learned in a better way. She above all made Chris feel special and not stupid. She told him he had great spacial orientation, he could see the big picture.. He liked that. Your mom got our whole family together, Dad, Mom, Todd and Chris and also did our personality test... That was fun and now we see how and why we related to each other the way we do... In 2005, Chris wanted to go back to your mom because he wanted to pursue more college and wanted to get extra time for test taking and a few other accommodations for his learning disability... She welcomed him back and did kind of a retest... and gave him all her findings... It is a better explanation to Chris when he reads what your mom has found in the way he learns... He would have never gone back to her on his own unless he trusted her and liked her. It is a testimony to your mom, since Chris is very shy and doesn't really feel that confident in himself sometimes. Chris takes these reports and reads them over at his house... I think he likes to know his strengths and work with his weaknesses... He has become a great leader in Young Life a non-denominational group of college kids that help high school and middle schoolers come together and learn about Christ and love each other and have a great support group that care about each other. He also leads baseball at Gainesville, high school as a coach for about 5 years now. He finished two years of college at Santa Fe and is now pondering what he wants to do with his life. Your mom has been an inspiration to all of us. What a great attitude she has and what a great smile... She even spells better than I do with her nose... I had a great visit with her yesterday... She had an answer out almost before I finished my sentence.. Whoops, I almost forgot to share with you that I think I met you at her office when you were very little... Your mom was soooo excited to have you... And I bet that made her a better counselor than she was before.. Our kids teach us so many wonderful things, if we just watch and listen... You certainly have a wonderful family, and I am glad to be part of the story... God bless Mary Anne, Dave, and Chris Lawhorne Dear Debby, John and Kate, I think about the three of you every day and as Thanksgiving draws near the thoughts and emotions become more intense as the last several years we have had the chance to spend a lot of time together during Thanksgiving week in Palm Beach. The three of you have become part of the Davidson family like it or not!!! Although I knew Debby when I was a little girl who hung out with my older sister Gigi, I have been thrilled to get to know you as my own friend the past few years. My comrade in arms raising gifted children! Over the years I have enjoyed all of my walks and talks with Debby along the Palm Beach Lake Trail and the many chats about kids and family and spouses in the back yard of my parents house sitting next to the pool (occasionally having a glass of wine or a Rum Dumb with Gordon). It has been wonderful to watch Kate and Mason to get to know each other and to have each other to hang out with for the Thanksgiving and Spring Vacations. I love how John will appear in our kitchen at 8:00 in the morning and help himself to a cup of coffee or something to eat. Or how he may suddenly appear taking pictures in our dining room during Thanksgiving Dinner! POor Debby always trying to reign him in !!! Debby Harris you are one of the kindest mot sympathetic people I have ever known. I will be forever grateful to you for having Mason spend the weekend with you two years ago when Rob and I desperately needed a weekend away. He had such a fun weekend with you and Kate and John and at a time in his life when he really couldn't cope with our leaving him you and John were our saviors. All my love. Gabrielle Davidson, Milwaukee, Wisconsin Dear Kate, Although we've never met, my husband and I have known your dad for many years. More recently, we were fortunate enough to meet your mom, and I have a story to tell about her. About a year and a half ago, we were looking for the right psychologist to administer gifted testing for our daughter, Oona, and your mom was suggested to us by a close family friend. She told us that Debby Harris was the most lovely and warm person you could ever meet, and the only person we should consider for the testing. Because of her glowing recommendation, we scheduled our appointment, and when we came in, Oona and I could both tell instantly that we'd chosen someone with whom she could really feel comfortable and make a connection. We were both very taken with her flowered Birkenstocks! Of course, because of your mom's calm and reassuring demeanor (and excellent skills), all went well, and as parents, we'll always have a special place in our hearts for her. I saw her a few times afterwards out shopping, and she always remembered us and paid extra attention to Oona, which made her feel so special. You're so lucky to have such a wonderful person for your mom, and I hope it gives you a great feeling to know how many lives she's touched, and how many people love and care about her. With parents like yours, we know you'll grow up to shine brightly. Cori & Mark Roberts Dear Debby, Holden and Mark enjoyed Super Summer two years in a row. The only reason we did not participate in Super Summer a 3rd year, in 2009, was due to being out of town. We fully intend to make Super Summer a part of our summer in years to come. This is such a great program and I am so thankful that you had the creative energy to bring this program into fruition years ago. The curriculum we wittnessed was truly inspiring and magical. It is wonderful to see kids love to learn. I asked both boys to write something about their experiences in Super Summer, of which they both remember quite well. They both included happy faces J in their letters. A good sign isn’t it? Much love and gratitude, Cindy and Tim Martin From Holden Martin, age 8 (11/18/09) Dear Dr. Debby, I had a great time at Super Summer. My favorite subjects were Bugs and The Human Body. My favorite part about the Human Body class was when we went to see a cow heart. My favorite part about Bugs class was making bugs out of playdough and looking at bugs and using our briefcase journals. I love Super Summer. Thanks very much. From Holden J « (imagine stick figure of boy here) From Mark Martin, age 8 (11/18/09) Dear Dr. Debby, I liked Super Summer because of all the fun activities and places. I really liked the I-Spy one. I like the little briefcases so much I still have mine. I like Super Summer so much I hope it will stay. From: Mark J Dearest Debby, John and Kate, This is about you, Debby – my friend – Kate's mom – John's wife – and friend to so very many people far and wide, that it'd be easy to feel kind of insignificant in Debby's life were it not for how very special Debby makes you feel when you are with her. Seeing all these people touched in so many powerful ways by Debby – working with her, learning from her, playing with her, even now in this last year having the gift of traveling with her on this most brutal journey with ALS – is to touch something that feels like magic, but it really isn't. Debby has simply, consistently, doggedly grabbed onto some principles available to all of us, but all too often refused: a willful decision to set aside judgement in favor of joy and connection, the wisdom to wholeheartedly embrace life and every person and the experience it brings, and the determination to leave every situation better than she found it. Thank you for that, Debby. Kirsten Haugen (to be continued...) Dear Debby, When I heard about Super Summer in May 2009 I was very excited for my son Philip. We live in Bell and though it is quite a distance we managed for him to attend 2 weeks. He really liked the program. I think he especially liked the hands-on. There is not a lot of time during regular school for those activities. I am glad that you invented the program and spend so much effort to keep it going. I so hope it will be continued. We will be moving out of the area in summer, so unfortunately Philip might not be able to participate this year but I wished a program like this is available where we are moving to. But I doubt. You managed to create something special and I am sure parents are thankful for it. I hope your health will improve and that you can continue what you started. Thinking of you and sending you strength and courage. Sibylle Valvo Schnotalla November 15, 2009 Hi John and Deb. I asked Christian to type a note to Kate. At first I thought about having him edit it, but after I read it, it was just so sweet the way he wrote it. He meant every word from his heart. As you can see, we always have to work on conventions of writing with him. I wanted you all to read it and then share with Kate. I don't have Kate's email to send it directly to her. If you would like us to do that, please email me back and I will help Christian send it to her. Much love, Tracey Bryant Memories for Kate November 15, 2009 Dear Kate you are my good friend because the best time we had was all of them I really can’t think of the best because they were all good. So the reason why is that when those times happened I hoped they’d last forever so thanks for the good times Sincerely, Christian Bryant (Kate's good friend and playmate, son of Tracy and Rick Bryant) November 14, 2009 Dear Debby, You have made a great difference in the lives of gifted children and their families. Your advocacy for gifted children has helped them deal with their gift and make a difference in this world. Through the years, I have quoted you often and shared how much I learned about being gifted. You helped me be a better parent of gifted daughters and a better teacher of the gifted. I wanted you to know you are among the best gifts I have ever received because you insisted that gifted women have a special challenge and a special calling. It gave me strength when I needed it, and I am sending this strength back to you with lots of love. Thank you, Diana Dear Kate and John; My story of Debby and my friendship goes back years to when we were both kids ourselves. As you know I grew up in Milwaukee and Debby lived in Palm Beach. My parents had a house there and we often went for vacations. Our house was two doors down from Dottsie’s and Debby often babysat Sophie. This is how we became friends. She was my Florida buddy. We had lots of fun and played tennis together. She was and still is considered a part of the Lett’s family who are great friends of the Davidson family and we all had many fun times together throughout many years. As we got older one year she spent a whole summer with our family in Milwaukee. I am guessing we were 16-17 years old as we ran a day camp for kids together. She did the driving as I didn’t have my drivers license yet. We picked up 5-6 kids every morning at about 8:30 and entertained them all day and took them home at about 3:30. We had a ball but it was very tiring. We took them to all kinds of parks, swimming, Mrs. Bradley’s sculpture garden, the zoo and they all adored us. Looking back it was pretty entrepreneurial. I think we charged $100 bucks per week per kid and we thought that was a lot of money. Wow those parents got a great deal. After college days we didn’t see each other as often as we all had jobs and I have lived in Hawaii so I hardly ever go to Florida. You can be sure though that whenever I ever did go Debby was on the list of people that I wanted to spend some time with. On another note I sometimes contacted her when I was having trouble with my son in his teenage years before we received his FAS diagnosis and she was always was willing to give me some good advice and had a lot of empathy for both of us. Debby always has a twinkle in her eye and has always been a very wonderful, giving and caring person. Lots of Aloha to you all Gigi Davidson, Honolulu Hawaii November 2, 2009 I remember Debby as a friend of my Mom's. She was just so kind. I didn't meet her very often, but I remember the first time I met her, I was a child and she was in our dining room, and in my memory it is just like there is this kind of golden light/halo around her. My memory of that meeting has always been that way. She was just so bright and warm and so nice to me that it just seemed like she brought the sun inside with her. I always have a warm feeling when I think about that meeting, and I have always had a good feeling about her. She is one of those exceptional people that right away you know you can trust. A few years ago, she tested my *very difficult to test* daughter for gifted. She was so sweet with her, and just as warm, kind and patient as I remembered from my childhood. She is a person about whom I have only good thoughts and memories. Warm wishes, D'Arcy Haskins November 8, 2009 I think that most people think that Debby and I know each other because we are both school psychologists. And that would make sense, however, that really isn’t the case. Although I knew of Debby and her practice prior to our becoming good friends, it was really Christian and Kate that brought us together. It was a brown-haired little girl coming up to my van, with my middle son, after a day at tennis camp, and handing me a piece of paper that had her name on it (along with Debby’s and John’s names) and her phone number, and telling me that she wanted to play with Christian. I looked at the paper and thought about the name Debby Harris. Then I asked Kate, “is your mom a school psychologist?” From that point on, I had the privilege of meeting Kate and her family and coming to know Debby as a “mom” and wonderful person. It turns out that Deb and I have a lot more in common than we knew before our two ten-year-old children came together. Both of us are working moms, who are driven to achieve and help others as we go. It also turned out that we both love tennis! In fact, it was Deb who really coaxed me into trying the “Junior Team Tennis” coaching program. She talked me into going to a USTA sponsored training to become a recreational coach at DB racquet club, and she and I, from that point on, helped each other with our teams! We had a great time and I was always impressed with how Deb worked to make sure each child on her team enjoyed tennis, no matter what his/her level, and was fair and consistent with everyone. She was even very helpful to me with my somewhat distractible child who could zone out right in the middle of a game! Not only have we enjoyed coaching tennis, but, our kids have had a great friendship that has resulted in many sleepovers, Halloween fun times, museum visits, library visits, movies, etc. It has been hard to see Deb with ALS, but deep inside, I know that she is still the fun-loving extroverted friend I have known these past four or five years. I was so exited to see the button on her nose last week when I was over. I know Deb has much to say and I want her to be able to say it! I pray especially for Kate. I know how much Deb loves her and wants her to know how beautiful and talented she really is. I also know that Deb loves John for all he is and all the tender and wonderful care he has provided her this past year. Deb, John, and Kate, your family has truly been an inspiration to me and I continue to pray for your well-being and perseverance. All my love, Tracey Bryant Hi Kate! I am remembering our class time at Talbot in enrichment reading. You came with Mrs. Silverman’s group, and we had a blast with Taran, Gurgi and Eilonwy! You were always very accepting of my strangeness, and for that I am grateful. I remember you and your mom coming in for a parent conference, and instead of us talking about your planner and multicolored sticky notes, the three of us talked about books. That was fun. You were reading The Golden Compass if I remember correctly. I was probably reading something about cats. I recently read The Cats of Roxville Station by Jean Craighead George, and it was really good. I think you’d like it. Anyway, this is a little bit about your mom. I first met her when I signed on to teach at the Super Summer program when it was held at PK Yonge. You weren’t even born yet, but I could tell your mom wanted to be a mom, and she was looking for you even then. She loved being with the kids at the program, and I could tell she was going to be a really cool mother one day. Little did I know you were headed her way. You are such a great fit! Anyway, at the summer program she was always so flexible when it came to what I was planning. I wanted to do some study units on the human body, the science of mixing things, ecology and bones, so she let me do whatever I wanted and she was happy to order whatever I wanted, which I have to say included some very, very strange items. She said when she went shopping for the things on my supply list she had a crazy time explaining to herself, and to Gail, her partner in the program, what she was buying. I had students bite into clay to take an impression of their teeth, they made jointed arm bone replicas so they could see the radius, ulna and elbow joint work, they made their own version of Coca Cola and had a taste test to see which one tasted the most authentic, we made sundials, and then everyone took an oath to help the earth by planting at least one tree for the rest of their life (or something like that.) One year I started out wearing a long overcoat and a fedora as a “science detective.” The kids all dressed up in costume on the last day the same way. Another year we began with a beach theme because it was summer, and I painted every child’s nose with that white stuff that protects noses from sunburn, I think it’s called zinc oxide, and I gave each child a gigantic blown up beach ball or shark or whale to carry to class. I wish you had been there to join us in our adventures. You would have led the group, of that I am certain. My point is how clever and creative your mom is. She has always inspired me to let go and do things that were interesting, fun AND full of learning with kids like you…brilliant and clever. Her flexibility and support helped me find all of that within myself and translate it to the students. I remember her telling me that I could create any kind of learning I wanted as long as it was “meaty but fun.” She wanted me to remember that it was a learning program for gifted kids, but after all it was summer, and summer did also mean…VACATION! Then there was your birth, which I have shared from my memories over and over with you and your parents. There you were in that upstairs room at Kate Turner’s house, protected from all our germs as we visited on the day of the baby shower. I remember how absolutely gorgeous your mom looked. She had on a long blue and white dress with some sort of swirled print on it…sleeveless I am sure. She looked so tan, pretty and fresh…and most of all happy, happy, happy. You had arrived, and there was nothing more she wanted. She had your dad, and now she had you. Then there was the time I met you again when you were about three, in the Mail Boxes Etc. store there by Hunter’s Crossing Publix. You were playing with toys while your mom did her mailing business, and after I chatted with her, interacted a little bit with you, and was going out the door, you followed me to the door, barred from rushing out across the parking lot by your mom and called out…”Good bye, Mrs. Cochran, I love you! I want to live with you!” That was so hilarious and cute, and sweet. Your parents kept telling me that I would someday have you in class, and indeed eventually I surely did. How lucky was I? I had taught Deanne my first year at Talbot, and finally I got to have you. I loved seeing your mom and dad at school, loved their fresh outlook on life, their spirit and presence. I loved seeing you every day on campus, from your first day there until graduation. I loved being able to share a part of your family. The wonderful thing about seeing your home this summer when I came to help, was the evidence of love present in every corner of the house. Buddy and Fiona are loved. What other labs have such gigantic kennels, an entire play porch for themselves, and the world’s best backyard? What other labs have labeled cutouts for their faces in the gate? Gavin is loved. What other cat gets such a distinctive and family honored name? Even when he brings a rabbit in the house in the middle of the night, and sits by the remains in the morning drawing attention to them by taking an elaborate bath, he is praised! Your parents love each other. There are photos and mementos of that everywhere. Each of them is unique and quirky (in a good way), and they totally accept and work with their differences because of that love. Family and friends are loved and honored. I have never felt more welcome that when I walk into your home, and I know everyone else who comes feels that as well. Most of all, you are loved and adored. What other house boasts the number of pictures of their daughter that yours does? It is clear when I am in your home that there are three connected spirits there, three individuals who share their strengths and support their weaknesses, and two parents who cherish their child…that’s YOU… just the way she is! We are all on our own life journey, one we cannot know until it presents itself, and if we choose to do so, we can travel with a positive spirit and dignity. I can see that happening in your home. The courage and positive energy among the three of you are an inspiration, and you are indeed a warrior. Nancy Cochran Dear Debby, Kate and John – November 4, 2009 The first time I met Debby was on an airplane leaving Gainesville a number of years ago. I remember thinking “What a lovely person…. She seems like the type of grounded human being that John needs to keep him from floating away into space.” You see, ladies, I worked for John many years ago, starting in 1992, and he was always coloring outside the lines, especially for government work. During that brief chat on an airplane, one of the things that really lit Debby up was her little girl, Kate. Wow, her eyes sparked when she spoke about Kate! I wish I could remember how long ago this was; I think Kate was still quite small. Regardless, seeing that love, and knowing, too, that Debby was some sort of expert on child development, I remember thinking, “What a special family for a lucky little girl!” For the first many years I knew John, he was not, in my eyes, a happy person. He had been through many troubles and difficulties, both personal and professional. But after finding a great job at the UF Center for Solid and Hazardous Waste Management (they funded my Master’s research, by the way!), and then meeting and marrying Debby, and then bringing Kate into their family, he was really like a different person; still coloring outside the lines, but with joy and purpose now. I can’t remember all the circumstances, but I recall once having a conversation with John about how he had been mistreated by this person or that, and he seemed totally at peace with all of it, like it was just a necessary bridge to cross to make him who he now is. I think it was just all the love that had come into his life, despite earlier losses, that gave him the ability to look past whatever crisis had come and gone. He found grace and peace and goodness after a dark storm, and that was beautiful to see. I have told him that Debby’s illness, too, will one day pass, and the sun will shine again, bringing new life to all three of you. My opinion of Debby really skyrocketed around the time John took up his shoe repair phase. At some point John told me that Debby had willingly agreed to allow him to bring home all that crazy equipment. Later, it became clear that this was a bit of an embellishment, but at the time I recall saying to John, “Lordy, you’d better keep that woman, because no other woman I know would put up with such nonsense!” He responded that Debby was, indeed, a most amazing wife. At this point I was utterly convinced that Debby must be some sort of a saint. Now, with the benefit of later confession, I realize that this episode confirmed neither sainthood nor temporary insanity; Debby just married a man with a wild imagination. Life is uncertain for all of us. One thing I am sure of, though, is that the kind of love that I see in your family, through John’s emails, is a rare gift. There is no fairness or sense to any of this, but you are doing everything you can to live fully, with love, and are providing so much inspiration to others. You are often in my thoughts and prayers, and I hope you know that thousands of us, out here, are pulling for you all. With love and healing wishes, Pegeen Hanrahan Dear Debby, You shine, you’ve always have, and you always will. Love from my house to every house you grace, Lola Haskins Dear Kate and John, I met Deb years ago when she was in grad school, through a mutual friend, Diane Farris. Besides the girl parties, with Marilyn and Hope and me and Diane, Deb and I used to hang out a lot, usually at the apartment she had in a pretty old Victorian in the northeast. She was wonderful to me. She used to keep my books of poems on her coffee table and point them out to whoever came in. Eventually I met her Dad, maybe not blood Dad but dad anyway, Gavin, and Dotsie her other Mom. Awhile after Gavin died, I stayed with Dotsie in Palm Beach because I had a poetry job down there—and in those couple of days I got to experience first-hand how much Dotsie—who was an angel to me because I was Deb’s friend—loved Deb. And she should have. Deb’s one of the most lovable people I’ve ever known. In the years we were physically close (we never stopped being close, just stopped being physically present), we used to cook together and talk for hours. I was needing a refuge myself back then and her apartment became my second home; as I remember, at one point I even had a key. Once Deb gave me a copy of Jane Brody’s Good Food Book. I still treasure it--both the book and the inscription. In fact, at Friends of the Library this year, I found a copy to pass on to my own son so Deb’s spirit is going to move in with him too. As it already has with D’Arcy (my daughter)—Deb saw her little girl, my grand-dear-child Ava. D’Arcy thinks about Deb a lot and when she talks about her, I can hear the tenderness in her voice. At the point in her life Deb and I met, she was in a bit of a crisis about finishing her dissertation by the time it was due. I was lucky to be there because I KNEW how terrific she was and I also knew her well enough to be sure that if she didn’t finish it, she’d always regret it. So we laid out a work schedule for her and – because she’d asked me to—I used to bug her about sticking to it. Which, of course, she did, and the rest is history. All those gifted children she’s helped--- so, so many. I’d had some elbow problems but I think it was during that time, we started playing tennis. I’d played a lot when I was a child and a teenager- even at one point playing tournaments all over California but for many years my life had kept me off the court. Deb talked me back on – one of the many empowering things she did for me. She beat me most of the time for awhile but when I caught back up we were pretty even and I loved playing with her. I remember how excited she was when she met you, John and I remember being introduced to you where she was living then in the Forest of the Unicorn and thinking she was quite right to be so happy. Some time between then and when she and John married, we drifted apart, not because we didn’t still love each other-- we always will; just ask Deb—but because we both got busy and because once she was married, I think Deb’s life just took its own path. A few times, my ex and I came to parties at her new house, but they were always big parties. I think UCG became her social life too, which was fine (how lucky she is to have such wonderful friends) but excluded me. The last time I saw Debby before she got sick was when she and John were just about to adopt Kate. It doesn’t seem so long ago but of course, we know that in human time it was twelve years. For the past while, I’ve been coming to sit with her and tell her poems and just ramble and even though by the time I heard about her illness she’d already lost speech, the love just poured between us. I told her the other day, she may remember, how much I admire her. And she wrote with her nose—Why do you admire me? And I said, because you’re so graceful and beautiful. And because you truly know that you’re not your body. And because you’re so shiny. And because I know that even though you don’t have wings, you can fly. And she can. I know she can. Lola Haskins Dear Beautiful Debby, I want to write you a love letter. As I sit thinking of you, your eyes immediately come to mind: warm, contactful, undefended, bright with intelligence and aliveness. Your eyes lead me to your spirit, which brightly shines through: compassionate warrior, unafraid of life, of the complex, of untraveled territory -- and deeply, passionately loving, loving, loving -- of people, of life itself. It is a rare joy and privilege to sit with you each week. I have always known you as immensely personable, caring and accomplished. From the time of our first phone conversation about working together, I feel like a door opened into an unfolding journey of love. And grace. And mystery. Your whole life, you have lived large. Whatever your life circumstances, you have spun its raw material into the gold of rich, open-armed experience. You live also with the strength and the focused, undoubting determination of the salmon who swims the challenging rapids, because this is simply, profoundly what life imbeds in us to do. From the richness of your own life experience, you have developed a great depth of compassion and human understanding, without prejudice. You have consistently given generously of yourself. You understand in your soul what it can mean to another to receive encouragement, support and love, and you have made it your life's work to ignite potential and possibility in others. You have touched innumerable lives, and continue to do so, unforgettably. Dearheart, in your beautiful, profound openness to receiving support and love at this time in your life, do you realize how much you are giving and teaching all who know you? I learn daily from you how to live with grace just as I am, and to recognize and appreciate with grace what life offers to me, even if it wasn't what I thought I was looking for. I learn that presence and truth are undiminishable, and that our lives are not contained by our bodies but reverberate through the love we have extended. Dearest Debby, tears of gratitude are in my eyes. Thank you for the indelibly precious gift of knowing you. Love always, Leslie Sahler I first met Debby in the Counselor Education Department at UF. I was the counselor at Terwilliger working on my PhD and Debby was taking counseling courses for her EdS, I think. She had so many wonderful stories of her work and travel around the world. She's such scholar and researcher -- she was always enthusiastic aabout the latest techniques and strategies to use to help children. I became involved in learning about an approach called Developmental Play, largely through Finnette Fabrick. Debby volunteered as an adult partner in a long term play therapy group and was an amazing partner for a long skinny 2nd grade young man. This approach also involved lots of interaction among us adults, and Debby was, as usual, such a positive force. Then when Debby began her work at PK Yonge as creator of Arete, the innovative gifted program, I attended workshops and meetings in which she shared her ideas. She was so helpful to families at Terwilliger through the FLAG parent advocacy and education group. At both Terwilliger and Littlewood, I referred many families to Debby for assessment and consultation. She always finds the treasures and gifts in every child and manages to find ways to instruct and cajole and gently move families in to healthy and encouraging and life patterns.. I also love watching Debby and John and Kate at church doing all the fun and creative things - writing, taking pictures, leading, sharing ideas. I can still see the excitement on the two new parents' faces when that beautiful baby came in to their lives. The baby shower, Christmas card photos, baby carriers, then stroller, then toddling along, starting school. Before I knew it, Kate was a middle school student and certainly her own individual person. I want to thank you all, especially Debby, who I've known the best and longest, for allowing me to share your creativity, energy, ideas, and spirit. Love to you all, Beth Dovell John, My favorite story and memory of Debby is from way back around the end of 1995 or early 1996. That was when one of the best dinner parties of all time took place over at your house. From what I remember, it was an adult only party and many of our church friend couples attended. One of the highlights during the cocktail time preceding dinner was when Allison whipped out some kind of magnifying devise used to look at vaginal juice cells to give an indication if a woman was ovulating. At that time, there were several couples who were trying to conceive, including Allison, Stephanie Milch and Debby. Sure enough, one by one the girls disappeared into the bathroom and returned to the party with some of their own cells under the microscope. This is turn was passed around for all of the party attendees to see to get an intimate, up close look at the insides of all of these hot babes! Dinner itself was superb, with you and Debby preparing the ultimate in taste experience. We all sat around a big long table. Wine was served and the partying continued. Before long, someone (obviously revved up by the pre-dinner sex titillation) had the brilliant idea for each person around the table to take a turn describing their most exotic sexual experience in their life. You can imagine the hilarity that ensued as each person described in detail their own personal sex story. I wish we had recorded them because there were some beauties. The party continued long after dinner but slowly the numbers dwindled until there remained only four – you, me, Debby and Allison. Do you remember what happened next? It’s all a little fuzzy to me, but I remember something about the four of us ending up naked in the hot tub in the dark. To top that, I also remember the four of us ending up naked in the shower afterwards, in the bright light. What a night! Somehow Allison and I made it home that evening safely. The next day I could only ask myself, “Did all that really happen?” I’m afraid so. You just can’t make that kind of stuff up, and I’ll never forget it. Thanks for the memories (and mammarys). John and Debby, I love you. Greg Whitford Debby Update, Friday, November 27, 2009 Dear Friends, This email may not make a lot of sense as I am rather sad and depressed and have been crying a lot. I am tired and worn out and frightened. I may have sent this to you twice. If so, please forgive me. Debby was transported by a medical transport to Haven Hospice here in Gainesville on Thursday for a five day respite stay. The process of transporting Debby out to the Hospice facility was frightening for Debby. I took her Hoyer Lift out there this morning as you have to be laid on your back to be placed on the type of Hoyer Sling that they have and Debby cannot be laid on her back as she will aspirate saliva into her trachea. They put her in old-lady pampers on Thursday night and I don't think she liked that. Flossie and Charlene will be going out to stay with her from 9 AM to 9 PM each day. Flossie and Charlene are the wonderful caregivers who I have hired to come to our house and take care of Debby during the day. The plan is to bring her home on Tuesday. The decision to go to Hospice for a respite stay was Debby's decision. I was out of the bedroom at our house when the Hospice Social Worker offered the five day respite stay and Debby immediately responded that she would like to go there for a respite stay. The purpose of a respite stay is to give the family (Kate and me) a break. This was not my idea. I did not even know that Hospice offers this service. Debby loves getting visitors. The visitor policy is come by anytime, 24/7. You can go and visit her anytime, day or night. If you have not had a chance to see her since she became sick and you feel like you want to go see her, please listen to your heart and do what your heart tells you to do. You do not have to stay for a long time. She is in room number 7, a big corner room with lots of space and windows on two sides. I think she feels somewhat isolated. There is no need to call before you go visit. So, if you have even just a tiny desire to go see Debby, please just go out and see her (if you feel like doing so). She is in a very nice room with a couple of fold out sofas. She has all her CDs and tapes and she loves listening to stuff about healing. She hopes to get better. She does not expect to die. Her email address is dharris@gru.net Again, she loves for people to come out and sit with her. So, please call her friends and tell them that she would like for people to come out and visit her. She is in a huge room and there is lots of room for lots of people to be there at the same time. Debby does not like being by herself and I cannot be out there all the time. Debby loves a party. The purpose of the respite stay is for Kate and me to have a break. She is still able to move her neck muscles, so, she is still able to communicate using her head mouse. I don't know how much longer her neck muscles will be working. She has lost the ability to move the muscles in her hands, arms, legs, feet, mouth, tongue, etc. Her chest muscles are growing weaker and weaker. If her neck muscles give out, we are in big trouble as she has to have working neck muscles to use her headmouse which is mounted on her MacBook. Her jaw is locked shut. I have to pry her lower jaw down with a sharp object and use a rubber spacer to hold her jaws open to brush her teeth. Debby has lost a lot of ground recently. Her leg muscles are also rather locked tight and her calf muscles are all tightened up. Her feet are now permanently pointed downward like she is a ballerina.. She cannot "unpoint" her toes and feet. If you go visit her, she loves to have her legs exercised. Please push on her feet and try to stretch out her calf muscles which are all bunched up into a ball.. Also, please move her legs so that her knees bend. I hope this makes sense. Her leg muscles and her knee joint are all sort of frozen and bunched up. She needs help to move her legs and exercise them. If she is not able to get someone to move her joints, they lock up. Her left shoulder has already seperated and the ball has fallen out of the socket. So, you have to sort of push her upper arm into the socket before you can move her left arm. She also loves to have massage. She has said that she does not want to go on a ventilator or have oxygen and she is at high risk for pneumonia. Please feel free to forward this email to anyone you think would want to know about this. Deb is scared to be by herself at night. She is afraid of choking to death. She wants someone to sleep in the same room with her on one of the two fold out sofas in her wonderful room so someone can call the nurses if she begins to choke. Bev Browning is spending the night on one of the two fold out sofas tonight (Friday night). Stacey Hoffman is spending the night on one of the sofas on Saturday night. We are looking for someone to spend the night on one of the sofas for Sunday night. Deb's sister Jenell is spending the night on one of the sofas on Monday night. If you feel like spending the night on one of the sofas with Debby overnight, please let us know. Thank you for your love and support for Debby, Kate and me. john November 16, 2009 Dear Friends- This is an Invitation (and an update)- Debby lives in faith, hope and love. Kate and I sort of live in two worlds. In one world, Debby gets her health back and she gets better. In the other world, we take care of Debby as best we can and we continue to make accommodations for taking care of Debby as the disease continues to progress. This is a progressive and fatal disease. I have cried my eyes out on more occasions than I can count. I continue to cry almost every day when I contemplate a future without our lovely and kind and smart and pretty and engaging Debby. Debby is holding on to hope and Miracles do happen... Debby likes visitors to come and see her here at our house at 5803 NW 67th Court in Spring Forest. She also likes for people to bring by their "brown bag dinner or lunch" and eat it with her in her "new" room along with a lit candle. Please send us an email if you want to come over for lunch or dinner and we will put you on the schedule that Miss Flossie keeps for Debby. We have disposed of our king size bed and Leslie Sahler, Kate Turner, the Helping Debby Harris trio (Joan, Linda and Carla) and her other friends have placed many of her very special things in her room. We have a number of chairs in the room and Debby loves having visitors. Please consider coming by to see her. You can just stop by if you want to. However, it is best to call before you come by to make sure she is not asleep or in the middle of a visit with someone else who has come to see her. You can reach Flossie, Debby's caretaker and keeper-of-the-calendar by calling our home at 352-377-3354. Alternatively, you can also call me on my cell at 352-339-2010. Many people have dropped food off at our house for Kate and me. We have really enjoyed the gifts. Please keep them coming. Some people have sent us monetary gifts. We have put our pride aside and we say "Thank You" for all the various gifts that have been given to us. The food has been delicious and the funds have been an enormous help in paying our bills and we are most thankful. Regarding food, Kate and I eat anything except liver and pickled herring. We even like Haggis (a Scottish dish with minced organ meats cooked in the stomach of a sheep). We keep a few coolers in our driveway near the garage door so that people can drop off their gift and then call Flossie (352-377-3354) or me on my cell (352-339-2010) to let us know that there is a surprise in the cooler. There is no need for ice. We also have a refrigerator/freezer just inside our garage if you think it should stay cold. We encourage everyone who comes over to use our back door and come into our house thru our garage. The front entrance has an awkward step up (outside the front door) and step down (once you are inside the house) and the back door is safer and easier. This is a tough journey. I would never have imagined that we would be on this journey. While we would never have chosen this path, we are looking for and finding gifts along the path. Thank you for all the support you have given to Debby, to Kate and to me. Thank you for honoring my lovely wife and best friend. Please pass this update along to Debby's many friends. We don't know how long she is going to be here with us. Sincerely, John Schert Update Nov 16 Debby is now in a hospital bed 24/7 and cannot talk, eat using her mouth, move her hands, her arms or her legs. She communicates with us using her laptop and a Headmouse Extreme/Keystrokes. http://www.orin.com/access/headmouse/ She can send and receive email. Her brain and thought processes are very much alive and she loves having people stop by and visit with her. She loves emails, visitors and living. There is a meditation group that meets here every Saturday at 11 AM to meditate around Debby. Contact helpingdebbyharris@gmail.com if you want to come by for the meditation time. She can still control her neck muscles and she can smile. I don't think anything could keep Debby from smiling. She sleeps with her upper body at about a 45 degree angle with her head tilted far forward. She sleeps this way to keep her saliva from draining down her trachea and causing her to choke. Her cough is extremely weak and she sometimes aspirates saliva into her trachea. Her ability to breathe has diminished a lot in the last month. Given the diagnosis, this is expected. Debby has a special form of ALS called Progressive Bulbar Palsy, aka Bulbar-Onset ALS. In Debby's case, the disease first attacked the nerves that controlled her vocal chords and then moved on to the nerves that control her ability to swallow, her tongue, her face, her soft palate, etc. The disease then moved down into Debby's left arm and hand and then more recently into her right hand and right arm. The disease is now destroying the nerves that control the muscles in her back, legs, chest and the muscles that she uses to breathe. It is hard for me to admit that Debby is in the final stages of the disease. She is at risk of developing pneumonia (from aspiration of saliva into her lungs). Many people with the kind of ALS that Debby has (Bulbar-Onset ALS) usually finally die of pneumonia. People with the more common Limb-Onset ALS typically die of asphyxiation as a result of the failure of their diaphragm muscles. People with Bulbar-Onset ALS generally have a shorter time to live after diagnosis relative to Limb-Onset ALS. Limb-Onset ALS starts in the legs or arms and then moves up the body and towards the head. Bulbar-Onset ALS starts in the head and moves down the body. Bulbar-Onset ALS patients usually die from pneumonia. Limb-Onset ALS patients usually die of respiratory failure. We feed her thru a tube that goes thru her abdomen into her stomach. She cannot swallow anything. She lost her ability to speak in late May and her ability to safely swallow a short time later. The tube into her stomach was installed in late April and then replaced with a "Button" tube in May. We lift her out of bed to for her bathroom needs using a Hoyer lift and sling. We have a really wonderful caregiver (Flossie Albert) who comes into our home from 8-530 Monday thru Friday. This allows me to drive Kate to school and go to work. Kate likes to listen to her ipod on the way to school and I like to insist that she take it off so we can talk about life and other important things. We sometimes stop at Publix and Kate buys some things to take to school to eat. If you have ideas about what Kate should take to school, please share them with me. Debby communicates with us thru a head mouse that is mounted on top of her laptop and is positioned in front of her on a movable hospital table. She has a reflective dot on her nose and the head mouse follows her nose as she moves it around to choose letters superimposed onto the screen on her laptop. The headmouse shoots out an infrared signal that bounces off her nose and back to the receiver which then tells the computer which letter or symbol she is pointing at. The technology is pretty incredible. There are long pauses in the "conversation" as it takes her a while to develop her response to the conversation. So, her visitors often sit on a tall stool or a chair sort of behind and next to her so that they can look at the laptop screen as she composes her part of the conversation. It is an interactive conversation and you can sometimes sort of guess what her next word is going to be as she "writes". I often sit in a chair near her when we chat and sit silently while she composes what she wants to say to me. She often sends her thoughts to me in an email while I sit with my laptop in my lap in a nearby chair or in the other room in front of my favorite fan. I have grown comfortable with the pauses. If you have a laptop, you can bring it along to send and receive emails from Debby to converse. Here is a web site for the technology that she uses to communicate. http://www.orin.com/access/headmouse/ Debby has impacted thousands of children and adults thru her life of giving to others, her membership at the United Church of Gainesville, her beloved game of tennis, her friendships with her large network of friends, her work as a school psychologist and as the creator of Super Summer. If you have not sent a letter or a story or your thoughts, please take the time to do so now... November 4th Update Thank you all for your love and prayers and hope for Debby and our family. It is coming thru very clearly. Our family has received a huge amount of support. It is remarkable to be on the receiving end of so much love. Please don’t feel like you have to read this whole thing… I wander a lot when I am writing. I have found that writing updates about our journey has been therapeutic for me. So, these updates are partly for you and partly for me. Many of you have written me and indicated that you like knowing the details and the more in-depth description of what is happening with Debby and our family. So, here goes- Nobody can predict what will happen to a person who has been diagnosed with ALS. From what I have learned, everyone has their own path on how this disease progresses. In Debby’s case, the disease has progressed very very quickly. The disease first showed itself in her slurred speech sometime before Christmas. Later, early in 2009, it moved to the muscles she uses for swallowing, her facial muscles, her tongue, her jaw and other muscles associated with her face and head. Debby was officially diagnosed as having Progressive Bulbar Palsy (aka Bulbar Onset ALS/Lou Gehrig’s Disease) on April 7, 2009 by Dr. William Triggs MD, a very smart, thoughtful, inquisitive, careful, compassionate and engaging neurologist at UF/Shands. The ALS diagnosis made by Dr. Triggs was confirmed a week later after a physical exam and review of Debby’s medical records by Dr. Ashok Verma a highly regarded neurologist and Director of the ALS/MDA Center at the University of Miami Medical School. It was confirmed again in May by Dr. Kevin Boylan, another highly regarded neurologist who is the Director of the MDA/ALS Center at the Mayo Clinic in Jacksonville. The doctors at UF/Shands installed Debby’s feeding tube in early May. Over this journey, Debby has had the best doctors and care available in the world. We are fortunate to live in a community and state with so many medical resources. In the last few months, Debby lost the use of her left arm and hand. Over this past weekend, she lost the use of her right hand. She was able to hold her pilot pens and her writing was readable until this past weekend. Remarkably, Debby has completely filled up a large stack of spiral notebooks with her “conversations” with people. The stack of filled spiral notebooks is about a foot high (she began writing in May 2009). Her leg muscles have weakened and are growing weaker. I don’t think that I am going to transfer to her shower chair using the Posey Lift/Gait belt anymore as she is much less able to help in the transfer as her leg muscles have grown weaker. I am afraid of straining my back. We began using the Hoyer Lift yesterday. I removed all the carpet padding from beneath the rug in the master bedroom on Saturday and moving the Hoyer Lift around with Debby in the Hoyer Lift Sling is much easier without the carpet padding. We have not fed Debby anything thru her mouth in a couple of months. I use the brushless end of a rubber-handled tooth brush as a spacer to hold her lower and upper jaw apart when I brush the inside surfaces of her teeth. I use a plastic vacuum canulla as a pry bar to pry her jaws apart as her mouth is locked shut by her muscles. After brushing her teeth, I wash her mouth out using a syringe full of water and a piece of short tubing that I slide up the outside of her teeth into her cheeks. I use the syringe to push water slowly thru the plastic tube into her mouth. She keeps her face tilted down and the water drains out of her mouth onto a towel. Debby has been sleeping in her reclining lift chair for many months. She sleeps with her head in an elevated position and her face hanging forward so that her saliva drains out of her mouth onto a washcloth and does not drain down her trachea and cause a choking episode. We moved her onto a special low air loss mattress on a electric hospital bed in the master bedroom yesterday. We are doing this to avoid me hurting my back and Debby getting a bedsore from sitting in her lift chair 24/7. The low air loss mattress goes thru cycles where the air cells in the mattress deflate and then re-inflate in a sequence to relieve any pressure points and allow blood to circulate to the skin to avoid a bedsore. The air mattress is also engineered to “leak” air out of the inner chambers to keep her skin dry and avoid a bedsore. We use the Hoyer Lift to lift her out of the bed and put her into her shower chair for a trip to the bathroom. It takes a while, but, we are getting better at doing the transfer as we do this more and more. Debby is getting used to hanging from the Hoyer Lift as we lift her up off the mattress high enough to move the Hoyer Lift out from under the bed. We then lower the Hoyer Lift boom down and slowly deposit Debby onto her shower chair. Debby’s chest muscles have weakened and she is at risk for having respiratory problems such as Aspirational Pneumonia, occlusion of her airway from collapse of her vocal chords, choking on her saliva or becoming hypoxic from not being able to get air in and out of her lungs. Debby hopes to live forever... We are all hoping for a miracle. We all hope she lives forever. Kate is seeing Tracy Doering for therapy and Kate likes this a lot. Brianna Schiavono has started a full time job at Shands and Angela DeBono is Kate’s new tutor. Brianna did a great job. Angela worked for us previously and we are looking forward to seeing more of Angela. Feel free to contact me if you want to take Kate out to the movies or something like that. She enjoys getting out of the house. She started a new novel yesterday that is at least two inches thick, so, please don’t feel hurt if she decides to stay home and read. Debby and I with our extroversion invade Kate’s space sometimes. We are working on it. As I indicated at the beginning of this email, I want to put together a collection of writings, stories, thoughts, letters and photos about Debby for Kate. I want to put together something for Debby and for Kate that speaks to what Debby's friends have done with Debby and also speaks to what they think and feel about Debby and the person she is. I intend to print it, so Kate can hold in her hand and read about Debby. I want to put together a document that celebrates the wonderful person who Debby is right now, who she has been over the last year and who she has been over the past 56 years. It can be in the form of a letter to Kate or some stories about Debby or whatever you want it to be. Don’t hold back. Please do it soon. If you have some photos of Debby that you would like included, please scan them or have them scanned and send me the jpeg along with a description of the photo. You can also just send them to me via the postal service and I can scan them and return them to you. My distribution list is small relative to the large community of Debby’s friends, so, please forward this email to anyone who you think would like to read this. If you know someone who does not have a computer please print this email out and give it to them so that they can write down what they want to say and mail it to me. jschert@gru.net Debby's life is slowly winding down. If you want to come by and sit with her for a few hours some evening, please contact me and we can set that up. You won't need to mess with the Hoyer Lift or feeding her or helping her to the bathroom. I will take care of all that. She wants to live forever and we all want her to live forever. It is hard and sad and overwhelming for me to imagine life without the sparkle and joy that is Debby. All the love and support that has flowed like a river into our house over the last year is a strong testament to who Debby Harris is. The disease is progressing and our time with Debby is growing shorter. I don't like acknowledging this. Debby is still hoping for a miracle and for a restoration to full health. If you feel like sending Debby an email, please do it. If you have something to tell her, please do it now. Her email address is dharris@gru.net. She is able to read all of her emails. Her fingers do not work anymore for her to type on her MacBook, but even losing her voice has not taken away Debby’s ability to communicate. She is using a software called Keystrokes and a head mouse and a little reflective dot on her nose to put her emails and thoughts together. http://www.assistiveware.com/keystrokes.php She is doing the best she can do... We all are doing the best we can. It is hard to let go of this wonderful person. Thank you so much for the huge river of love and prayers and thoughts that you have sent to Debby and Kate and me and the rest of Debby’s extended family. Thank you. john November 2, 2009 Debby's health continues to decline. She has lost all use of her left arm/hand and has lost about 95% of the use of her right hand/arm. She still has a bit of strength in her legs, but, they too are almost gone too. Her chest muscles that she uses for breathing are getting very weak. She communicates with us using a reflective dot on her nose and a program on her Macbook. She moves the curser around with her nose and when she keeps it on a letter for a second, it registers as a letter. It is slow, but at least she can communicate. She is still in a lift chair, but, we will have to move her to a hospital bed soon. Kate is seeing Tracy Doering as her therapist. Kate likes Tracy a lot. ALS is one tough disease! I cry a lot when I think about what has happened to Debby and her future passing. I am not looking forward to life without Debby. Dr. Runi Foster MD is Debby's wonderful friend and Runi is also a dear friend of Debby's. Runi has noted that Debby's chest muscles have become weak and that her breathing is not very strong. She has episodes of choking when her saliva drains down her trachea. Her "Helping Debby Harris Team" (Joan, Carla and Linda) were over today consulting with Debby on how she wants the master bedroom arranged. The four of them met for a while and came up with a plan that they will be implementing over the next couple of days. Dotsy and Sophy came up from South Florida to see Debby this weekend. It was a real nice visit. We have had so many different people reach out to us... Debby's love and spirit are strong. She listens to CDs about spirituality and healing a lot of the time. Things are winding down. John October 29, 2009 Debby's legs are getting weaker. We have a Hoyer Lift on the way to help us get Debby in and out of a hospital bed. This is sad. We are moving Debby from the lift chair to a hospital bed to help avoid bedsores. I am so proud of my wife. She approaches this whole thing with such grace and dignity. We would be in big trouble without Flossie and Runi. Flossie is so faithful about coming over to take care of Debby. Runi checks on Debby 3-4 times a week and is so out-in-front of heading off stuff that could be real bad. Lots of people keep coming by our house to help with things. Tracy Bryant is here cleaning the bathrooms, Chris Machen and Kathy Funke were here yesterday doing laundry, changing sheets and cleaning. Leslie Sahler is so faithful about coming by to see Debby a couple of times a week to help Debby explore life. Kay James quietly goes about doing all sorts of things. Stacey Hoffman is over here showering Debby with her love. Joan Stevens is over here all the time organizing the Saturday morning meditation group that meets here at 11 AM each Saturday. Joan also organized Debby's birthday party. Linda Lewis and Carla Hotvedt were just over here planning out how to organize Debby's bedroom with Debby. Kate Turner was just over cooking a big pot roast and roasted veggies and making things beautiful. Chris Machen came over and cleaned up all the hair and dirt in the playroom that the dogs bring in. Yuck... Brianna Schiavoni has had such a wonderful impact on Kate. Lisa Schiavoni is a wonderful presence to Debby. We had an IEP Meeting at Kate's school recently and Lisa, Brianna, Kate, Nancy Loeper and I were there to talk with Kate's wonderful team of teachers at the Academy at Howard Bishop Middle School on how they can help Kate continue to be successful in her education. Nancy Loeper continues to pick Kate up at her school each Wednesday to take her over to her house for some time of creative writing coaching. Kate looks forward to these times with Nancy. Chris Machen took Kate out horseback riding on her horses out west of Gainesville. Chris Machen and Mike Murphy hauled off two pickup truck loads of junk from our garage this past Saturday. I am trying to let go of all my junk and they were so gracious to come over and sort thru all that junk in the garage and help me let go of so many things. What an incredible gift. Norbert and Tracy Musial and Ed Shroka and Steve Yeats (our neighbors) have been over on multiple occasions cleaning up the yard and pressure washing the porch and blowing off the driveway. Dean Williamson has picked up meals for us at Woody's barbq. His lovely wife Peggy is undergoing chemo and radiation for breast cancer and here is Dean bringing food to our house. What an amazing person. Holly Ray is over here loving on Debby as is Renee Speisman and her husband Michael. Rosy Fox brought by a massive dish of lasagna last night along with some french bread and a carrot cake and some salad. Rosy brought by a Halloween Costume for Debby last week. Rosy is so funny.... Rachel LaCombe comes over here every Friday at 4:30 PM to allow me to take off and do something for as long as I want. Rachel is amazing... Sometimes Kate goes with me. Sometimes Kate goes out with her friends and sometimes Kate just wants to stay at home and type on her fictional stories. Thank you for all the cards and letters for Debby that keep coming in. She loves hearing from you all. I am trying to put together a book of your thoughts about Debby. I want to include photographs and cool stories about Debby. If you have some thoughts or a story or a photo you would like included, please send them to me as a Word Document. I want to read these stories of appreciation about Debby as they come in and put them into a document that I can put online. jschert@gru.net This whole thing is a nightmare, a tragedy. I wish someone had a cure for this disease. I did not know anything about ALS prior to this nightmare. Judie Benwick with the Florida Chapter of the ALS Society has been such a wonderful source of information helping us to take care of Debby and make modifications to our home that are so helpful. Thanks you so much for your support. john October 24, 2009 Kate and I went to a Checkers Drive-Thru tonight for dinner. We had a great time eating our fastfood in the car in the parking lot at the Royal Park Cinema. After we finished our fine takeout food, we got out of the car and went in to see the movie Inglorious Basterds. Lisa Schiavoni stayed with Debby while we went out for a night on the town. We love having downtime. If you want to come over and sit with Debby for an hour or two or three in the evening or over the weekend, please let me know (jschert@gru.net or my cell 352-339-2010). I will make sure that Debby is fed and has gone to the bathroom before I leave to go out with Kate for dinner or a movie or both. Debby's condition continues to decline. She is having more periods of coughing for a long time after aspirating saliva down her trachea. She has a very weak cough and she is at high risk of developing Aspirational Pneumonia or having an occluded trachea from collapsed vocal chords. We are all doing the best we can do. We had a really great birthday party for Debby on her birthday, Sunday, October 11th, here at our house. We had a huge turnout and Debby loved all the cards, emails and messages that were sent to her and continue to flow in. Debby's email address is dharris@gru.net Joan Stevens put the party together and Debby had a really great time. You can see a series of photos from the last year of our journey together at http://picasaweb.google.com/jdschert I need your help. I am trying to put together a series of stories about Debby. If you want to write a letter to her or if you want to tell a story about Debby or you just want your thoughts included in a collection of stories I am putting together about Debby, please send them to me (John Schert) at jschert@gru.net. You can send it to me in an email or as a Word Document attached to your email. I want to put together a book about Debby. I also want to share your stories with Debby as I receive them. If you have something you want to say to her or include in a book about Debby, please send me your stories or thoughts. Kate and I love receiving the meals and food that so many of you have dropped off in the coolers in our driveway. Thank you. Just bring your meal by our house at 5803 NW 67th Court and drop your gift off in one of the coolers and then call me on my cell and let me know that we have a surprise in our cooler. I appreciate the financial contributions that so many of you have sent to me to help pay our medical bills (which have been substantial), buy the equipment we need to help Debby communicate and cover the cost of hiring a daytime caretaker to come in and take care of Debby. We are spending about $2,500 a month to have a daytime caretaker come in and take care of Debby. You all have been so generous with your love and support. We are so fortunate to have such an extensive support system here in Gainesville and all over the US and Scotland. Thank you so much for the generous love and support that you have extended to Debby, Kate and me. We are experiencing a major loss and we are doing what we can do to make Debby comfortable as the ALS runs its course. The disease is progressing very quickly. If you have something to say to Debby, please do not wait. If you have something to say, do not delay or think you will get to it later, this moment is the moment. This is hard stuff. John October 7, 2009 Debby Harris Update I have been avoiding writing an update. The last one I wrote previous to this October 7th update and posted on www.drdebbyharris.com is dated July 13th. I wrote this update on October 7th and revised it several times. For a retrospective look at this journey, go to http://picasaweb.google.com/jdschert The first album (top left) is about Debby's journey. It is hard for me to write this. It is hard to acknowledge how far this disease has progressed and how much muscle function Debby has lost. Debby hopes that she will get better. I also hold onto the hope that Debby will get better. I am confronted each day with how relentless this disease has been. I asked Debby if I could send out an update. She said YES. She also asked me to candidly tell the facts about her condition. Here goes- Debby was walking using a four-wheeled rolling walker until about a week ago. We now transport Debby from her recliner/lift chair to the bathroom using a very nice rolling shower chair that Kate Turner brought to us. We have a Posey gait belt with handles on it that that makes the transfers from Debby’s lift chair/recliner to the shower chair much easier. Debby is not able to walk, talk, eat, move her left hand or arm or scratch her head or face. She is able to grasp a Pilot Roller Bearing Pen using her right hand and write words although it takes a lot of effort for her to do this. In spite of all the losses, Debby is still upbeat and positive. Debby gets her calories thru her “button” which we hook up to a feeding bag on a transfusion pole. She had a gastric enteral feeding tube until one of the docs at the Mayo Clinic replaced her tube with a low profile button. We have hired a new caretaker for Debby, a wonderful 67-year old lady named Flossie Albert. Flossie has been a caretaker for many years and has a very special relationship with Debby. Flossie comes in around 7:45 AM each morning. This allows me to drive Kate to school before going to work at UF. Flossie transfers Debby to her rolling shower chair and rolls Debby back to the bathroom where she showers Deb and dresses her. Flossie takes care of Debby all day. She feeds Debby using an enteral feeding bag hanging from a portable transfusion pole. She puts Debby’s laptop on a pillow in her lap, helps Debby with all sorts of tasks, does laundry, does a super job cleaning up the kitchen, runs the vacuum cleaner to keep the rugs clear and so on. Flossie is a wonderful caretaker for Debby. She is also wonderful addition to our family. Kate is enjoying school at the Academy at Howard Bishop Middle School. She grasps the gravity of the situation. Brianna Schiavoni picks up Kate at her bus stop in the afternoon and brings her the one mile distance from her bus stop to our house where she helps Kate get her homework done. Brianna is a very accomplished person with a BA in Psychology and a Masters in Clinical Social Work. Brianna is the perfect person to help Kate. Nancy Loeper picks up Kate at school each Wednesday and takes her home where they engage in creative writing practice. Many of our friends are reaching out to Kate in a variety of ways. Chris Machen (wife of UF President Bernie Machen) took Kate horseback riding this past weekend on her horses on some property west of Gainesville. Our neighbor Cathy Leonard helped us get Kate’s cat Gavin to the vet when Gavin got very sick recently and saved Gavin’s life. Debby’s birthday is on Sunday, October 11th. She turns 56. Her email address is dharris@gru.net. Our home address is 5803 NW 67th Court, Gainesville, Fl 32653. She loves hearing from you all. Her ability to use her MacBook is limited as she uses the knuckles on her right hand to push the keys. So, if you send her an email, she may not be able to write back to everyone who sends her an email. She loves getting emails and cards and letters. You all have been great about reaching out to her. Thanks so much for your help and support, John, Debby and Kate Here are some more tidbits about what is going on with Debby and our family- Debby’s new power wheelchair came in last week. We have the new wheelchair ramp going up to our back door and we hope to take rides/walks around our neighborhood as the weather cools off. If you hear about a good deal on a used van that has a wheelchair lift on it, please send me an email (jschert@gru.net) or contact me via my cell (352-339-2010). Debby also has her new computer communication-assist device. She is still on the learning curve. We need to get the factory representative to come by and do a second training session with us. The first training session was with a person who is new with the company and I don’t think we learned very much. From what I have read and from what the doctors have told me, Debby’s progression is consistent with Progressive Bulbar Palsy (PBP). PBP is a progressive and ultimately fatal neurological disorder which usually first shows up causing a slurred voice. Like ALS, the mechanism of PBP is that it damages/destroys (1) the upper motor neurons (brain cells) and (2) the nerves between the spinal chord and the muscles which are together responsible for movement of voluntary muscles. PBP (also called Bulbar Onset ALS) usually starts with slurred speech and then goes on to destroy the upper and lower neurons responsible for the swallowing mechanism. As the muscles lose their connections with the brain, the muscles become paralyzed and waste away, being absorbed by the body. Some experts believe that ALS and PBP are the same disease with the main difference being that ALS usually starts in the hands or the feet and PBP starts in the head with slurred speech or difficulty swallowing. ALS often progresses on like PBP to involve the head and speech and facial muscles. PBP usually progresses on to the major skeletal muscles. In Debby’s case, she has lost all use of her left arm and hand and has lost much of the use of her right hand and arm. She cannot scratch her head or face and she recently quit walking using her walker. PBP has taken away her use of the muscles which control her jaw, her face, her tongue, her neck muscles and the muscles involved in swallowing. It is extremely difficult to open Debby’s jaw as the muscles which open and close her jaw are locked in a struggle against each other and the muscles responsible for closing the jaw are much stronger than the muscles which open the jaw and the muscles that close the jaw are winning. Brushing Debby’s teeth is a challenge. PBP has a double whammy impact on saliva. Deb’s salivary glands have become over-active and are producing large amounts of saliva. With her ability to swallow reduced, Debby cannot swallow much of her saliva and the only way for her to keep from choking on her saliva is for her to keep her head tilted forward with her mouth facing down so that the saliva drains (drools) out of her mouth onto the bibs that we keep around her neck 24/7. Since Debby cannot move her left arm and can only move her right arm in a very limited way, she often has saliva drooling out of her mouth. Kate was “drooled on” for the first time a couple of months ago. She did not like having her mother’s drool/saliva on her arm. I told Kate that she needs to get used to having her Mom’s drool on her arm as this is part of our new reality. Runi Foster hooked us up with the children of her very elderly next door neighbor who passed away recently and they generously gave us their deceased father’s recliner/lift chair. Kate Turner had a friend who had a super nice shower chair that she no longer needed. Kate brought the shower chair over and it has been a wonderful addition to our life as Debby cannot make the walk from her chair to the bathroom anymore. The shower chair that Kate Turner brought by is a very nice one and it makes it very easy to transport Debby from the living room to the bathroom and on into the shower. The recliner/lift chair and the shower chair are both expensive items that were given to Debby that we use everyday. Medical insurance will only pay for the lift mechanism in a lift chair (will not pay for the chair) and medical insurance will not pay for a shower chair. People are still dropping off meals in the coolers in the driveway. Thank you so much… Kate and I love the food. Debby’s diet is pretty much limited to what we can get into her thru her “low profile button”. We are able to give the canned enteral formulas that are traditionally given to patients who have a tube or a button. We also give her drinkable yogurt (we buy the kind made from whole milk to maximize the calories) and certain soups that will flow thru the small diameter hole in her button. Kate and I love the meals that have brought to us and continue to come our way. If you drop something off in one of our coolers, please call me on my cell (352-339-2010) to let me know that you have placed something in one of the coolers. You don’t need to put any ice in the coolers as we get our “gifts” out right away. We have also received many monetary gifts from our generous friends that we have used to pay for our copay portion of the cost of the communication assist devices and the part of Debby’s medical bills that our insurance does not cover. The cost of having a caretaker over 8 – 10 hours a day is $2,400 to $3,000 a month, and we don’t have Debby’s income anymore. Debby’s healing fund is getting low on cash. I have learned to drop the part of being “proud” and not accepting another person’s gift. I have learned to simply accept the gifts that are given to us with a “Thank You Very Much For Your Kind Gift”. So, if you feel like sending us a contribution to help us with our bills, please feel free to do so. I have set up a modest monthly payment plan with two of the medical institutions that we owe money to. Debby loves reading and re-reading the many letters which she has received over the months. The wonderful group of ladies who clean our house on Wednesdays continue to work their magic. There are way too many of them to name. They are angels. They organize things, clean the house, clean the bathrooms, do laundry, change sheets, etc… Amazing…. Our neighbors have come over on many occasions to pressure wash the front brick walk (it was slippery with algae) and the back porch and cut up a dead tree in the back yard and cut down the brush in our front yard. They keep coming back to do more. Given all the losses that Debby has suffered, I am not so upbeat about what the future holds. In one part of my mind, I live in the hope that Debby will be healed and regain her full physical abilities. I have also been a close observer over the last ten months as she has lost the ability to do things that normal people do like walking, eating, waving Hello, itching their face, writing, typing on her laptop or giving someone a hug. We live in two realities. One reality has Healing and Hope and Wholeness and Peace. We also live with the reality of living with a progressive and fatal neurological disorder. Thanks again for all your help and support. We sincerely appreciate your help, support, meals, gifts, prayers, visits, cards, emails, letters and other expressions of love. Sincerely, Debby, Kate and John Gainesville, FloridaThank you for visiting Debby Harris's Web Site. www.drdebbyharris.com The Gainesville Sun ran a real nice story about Debby in the Saturday, May 30 edition. http://www.gainesville.com/article/20090530/articles/905301012 Debby's email address dharris@gru.net John's email address is jschert@gru.net John's cell is 352-339-2010. Our home number (which we do not always answer because we are often on "overload" these days) is 352-377-3354. If you want to send us a message, email is probably best as we are sort of on overload... We often forget to get the messages off our phone message service... Our home address is 5803 NW 67th Court, Gainesville, Fl 32653. We have found that we cannot take ourselves too seriously and that laughter is great medicine... Much love... john and debby and kate Monday, July 13, 2009 2:00 AM Dear Friends, I thought I would send you an update on what is going on with Debby and our life with Kate and our extended family. I hope you are OK with me sending this to you. Please let me know if you would rather not receive these updates. I have received many emails from people asking to be put on the list to receive these emails. I am not very good at this, so, please feel free to send this on to Debby’s many friends. Feel free to send this to people who do not know us as we need all the prayers we can get. We know that there are many people out there who have helped us and that there are groups out there who like to help families and persons in need. We have been humbled by this experience and we are very open to receiving help. We know we can not go thru all this on our own and that we need help. Fist off, I should tell you that Debby is in excellent spirits. Debby is an amazing person. She has a most positive attitude. I admire my wife enormously and I am so proud to be married to her. She is able to maintain a sense of grace and style even as many of her physical abilities (speech, ease of swallowing food and beverages, ability to fully use her left hand, etc) have been taken away from her. I love her so much and am so thankful that I am married to Debby. I am so proud of her. I am so fortunate to be married to Debby. Debby is down about 25 pounds since January 2009 when we started our Diagnostic Journey. Losing weight is not a very good thing to do if you have this diagnosis. We are trying very hard to keep her from losing more weight. She likes to eat food that has been chopped up into very small pieces. We are trying to get as many calories into her as we can. We add sour cream to almost everything she eats. She quit eating low-fat frozen yogurt (or low-fat anything) and is now eating real ice cream. She eats a lot of yogurt made from whole milk. She drinks water in very small sips to keep the water from slipping down her trachea and causing a coughing spasm/attack. She tried drinking some wine a few months ago and quickly learned that she should not drink wine anymore. She loves to drink "thick" drinks like keifer, apricot juice, drinkable yogurt, etc. She has an occasional cup of hot tea. Dr. Cassisi (a very renowned throat surgeon at UF who is mostly retired) told us that hot drinks (and cold drinks) are easier for her to drink as her nerves in her throat are better able to sense drinks that are not at room temperature. Debby drinks some hot tea each day. The swallow study at the Mayo Clinic showed that thickened liquids are less likely to be aspirated into her trachea. Aspiration of food or liquids into her trachea is a risk for Debby. Aspiration of food or liquids into her trachea can result in something called Aspiration Pneumonia, a bad condition for anyone who has been diagnosed as having Progressive Bulbar Palsy (PBP). Pneumonia is dangerous for people who have been diagnosed with PBP. People with PBP often have a weakened cough and cannot easily clear liquids or solids from their trachea. Debby was having a somewhat difficult hard time getting from a sitting position in a low chair to a standing position last weekend. We hired a carpenter on Craigslistwho added some two by fours to the legs of our sofa to raise the sofa by about 3.5 inches. Debby is now able to get from a sitting position to a standing position much more easily. Debby’s wonderful friend Runi Foster is working on getting a very slightly used special type of recliner/lift chair from one of the zillions of people who Runi knows. Linda Lewis, Carla Hotvedt and Joan Stevens are the coordinators of a new organization called Helping Debby Harris. These three women are an incredible team. We are so fortunate to have them in our lives. If you want to do something to volunteer to help us, please send an email to Linda/Carla/Joan at helpingdebbyharris@gmail.com Linda, Carla and Joan are the best people to contact if you have something you want to help us with. It is best for us if you contact Linda, Carla and Joan with anything you can help us with. I am a very lousy coordinator and I am trying to step back from being Debby’s main coordinator. I am trying to fire myself as Debby’s main Coordinator and give Debby’s many friends a chance to step up and help. The ALS caseworker (Judie Benwick in Jacksonville) assigned to ourcase has been telling me very loudly to step back and ask for some help taking care of Debby. She says she wants me to avoid coming down with “caregiver burnout” and get some help. Debby continues to use her cough assist machine 3-4 times per day. Dr. Boylan at the Mayo Clinic in Jacksonville has told Debby that this is her most important piece of physical therapy equipment. When she aspirates anything into her trachea, we try to quickly get her on her cough assist machine to help her clear her trachea. Her cough assist machine is an amazing device. It pushes air into her lungs and then sucks the air out at a very high velocity. It stimulates her to cough and helps her clear her trachea of food and liquids. It also helps her to expand her lungs and keep her diaphragm flexible and in good shape. She has a super cool electric toothbrush that she uses to get her teeth super clean. She loves to eat things like brown rice we have FIRST put it thru a food processor. She loves black beans that have been put thru a food processor and have lots of sour cream in them. Blanca next door makes wonderful black beans. (Blanca was born in Cuba, so, she has an edge on most people who make black beans.) She is walking VERY well. We went to Gainesville Health and Fitness today. She had a good long walk. She seems to like to stay up late and sleep in. We are working on getting her to bed earlier. I am working on not staying up so late myself. Claudia Connelly and Peggy Bowie were over this weekend planting more flowers in Debby’s backyard garden. The flowers are very beautiful and Debby’s chair in her home office looks out on the flower garden.. We had a great harvest of cherry tomatoes and some yellow squash from our Spring Vegetable Garden. Nancy Cochran, Chris Machen, Blanca Garcia and Kate Turner were over earlier this week for two days doing laundry, cleaning out tons of junk, organizing the kitchen, and doing all sorts of other cool cleaning activities earlier this week. We understand that they are coming back next week. Yeah!!!! (It is a bit humbling to have the wife of the UF President ironing my shirts. I have discovered that Chris Machen is a normal person just like you and me and the rest of us.) Kay James drove Debby to all kinds of appointments on Friday. Kay is great. That was so helpful for both Debby and me. Kandy Penner is helping Debby learn how to use an Alt-Chat, a very cool machine that Debby can use to communicate without having to write everything down. Debby mostly communicates via writing with some special Pilot Roller Ball Pens that Jennifer Donsky brought by. Debby loves to write with these pens and she has filled up many spiral notebooks. Kandy is helping Debby learn alternative ways of communicating. Here is some great advice that Dr. Cassisi shared with me in one of his many wonderful emails- "Dear John- I'm so happy you took my advice, it's so important for your and Kate's mental health to "get away", to recharge your emotional batteries in order to face the ordeal that your entire family is going through. By the way, I really enjoyed the movie "Angels and Demons" (too), it's nice to be able to "escape" from time to time. I'll share with you what I have told many of my patients and their families when I had to tell them that there was no cure for their cancer. I tried to get them to understand that TODAY might be the best day you'll have, and once it's over, it's gone forever, and if you waste it, you'll never get it back. You can cry, feel sorry for yourself, or whatever, but only for 15 minutes or less each day. Talk about your concerns, worries, and what might happen in the future, because if you are thinking about these concerns, your spouse and children might also be worrying about these same concerns. Finally try not to change your routines if possible. I use the analogy that if he leaves his socks on the floor, and you yelled at him in the past, there's no reason not to do so now. Appreciate yesterday, enjoy today, look forward to tomorrow. Nick Cassisi, MD." I am trying to follow Dr. Cassisi’s advice. I am getting better at asking for help and letting our needs show. I sort of live in two worlds. In the first world, Debby has experienced some losses. She cannot speak out loud using her vocal chords to say words that Kate or I can easily understand. She has difficulty swallowing and goes into a coughing spasm if she gets something down her trachea. Debby does not accept a diagnosis of ALS. She is defiant and is doing everything she can to fight and keep herself functional. She is an amazing person. In the second world, Debby is going to get healthy and get her voice back. In this second world, all of your prayers and good thoughts are all working together to bring Debby back to perfect health. In this world, Debby’s diagnosis of having ALS is rescinded and she returns to the world of being able to fully speak, run like the wind play tennis for hours (and beat Runi), eat whatever she wants, yell at me, ride a bike very fast and dress and undress herself with ease. In this second world, she becomes a fully normal person again with an ability to do anything. I feel like I live in both of these worlds. It is like living in a tension. The first world confronts me right up close and personal each day. Should I just accept the first world and celebrate what Debby has right now? I try to do that… I try to live in the present moment… I celebrate the NOW. The second world is world that I hope and pray for. The second world is the world of hope and miracles. The belief in the second world helps me keep going. I try to reconcile these two worlds, or, maybe I don’t have to reconcile these two worlds…. Maybe being an adult is living in both these worlds at the same time and living with the tension of celebrating what we have right here and now, honoring and mourning what we have lost and holding onto hope for the future. I don’t know… It is all a mystery. Many people ask me how Kate is doing. Kate spends a lot of time writing fantasy fiction on her laptop. She also spends a lot of time with her good friend Hadiya. We take Kate to see our wonderful family therapist and healer Leslie Sahler. We all see Leslie individually and also as a family. Kate would just as soon not go talk to a therapist, but, it is good for her to do this and Leslie is the best therapist in the world. I don’t know many 12 year old girls who like going to the therapist… I like going to see Leslie because Leslie is so talented, she has wonderful insights, she lets me cry, she accepts me just the way I am and she helps us so much. Kate and Hadiya and I went to see the movie Angels and Demons last weekend. After we dropped Hadiya off at her mother’s home, Kate commented that movies are great fun and she realizes that she is still in her same life after she walks out of the movie. Life in the work part of my life is great! We received our annual solid waste research appropriation from the Florida Legislature and the FDEP and we just went thru the process of awarding a number of grants to faculty at the nine universities we work with. The folks I work for and with at UF are wonderful and compassionate people. My colleagues at our office, Rhonda Rogers and Tim Vincent are the most wonderful co-workers I have ever had. They have wonderful empathy and compassion for my situation. My colleagues at the FDEP have also been very wonderful to me. We have acquired some really cool communication devices for Debby with the funding many of you sent to us. Some of the devices we have are on loan from friends. We have gotten one device as a rental. We got another device thru a loan from one of the factory reps for Saltillo, a company that manufactures communication-assist devices. We are also talking to the Florida Chapter of the ALS Society to see what we can borrow from them. The world of the ALS Society is a vast and new world. Those Florida Chapter of the ALS Society folks are pretty wonderful. Kandy is teaching Debby how to use the communication equipment. We received a number of generous contributions from our friends to help us get this equipment. We are using some of the money to help pay medical bills. We are also holding money aside to be able to pay for more sophisticated and more expensive equipment that Debby might need in the future. We have not co-mingled contributions we have received with our family finances. We put the communication contributions into a special checking account that Debby calls her “Healing Fund”. She carries the checkbook for her Healing Fund and the checks are printed with angels on them. Some friends have given us some money to use for traveling when Debby is ready to travel to Scotland (to see our wonderful Scottish Family) or Brazil (to see John of God, the famous healer who some of the saints work thru). John Moran asked me what he could do to help us. I told him I would like him to shoot some photos of our family. John came over and shot some beautiful photos of our family a few weeks ago. Another photographer named Shandon Smith came over Sunday afternoon to shoot some more photos of our family. Sally Scott arranged for Shandon to come over. Tara Boonstra is preparing a petition to be sent to the Adoption Court in Illinois to petition the court to appoint a special person to open Debby’s adoption file and find Debby’s birth mother. I have written Oprah and asked her to help us find Debby’s birthmother and help Debby meet President Obama. The President sent Debby a nice letter telling her that he hopes she gets better soon. There are ways that you can plug in… Please send an email to helpingdebbyharris@gmail.com if you want to plug in to help with some of the items below. Our wonderful ALS Caseworker in Jacksonville, Judie Benwick has been on my case to reach out for help. Linda, Carla and Joan are masters at coordinating all the people who are standing up to help us on our journey. I am finding that my work at UF is a welcome distraction. If you want to help or have an idea on how to help us, please coordinate with Joan/Linda/Carla by getting in touch them by sending an email to helpingdebbyharris@gmail.com If you call the house, you will probably get a voice recording. Sending an email to helpingdebbyharris@gmail.com is the best way to get involved. I want to also acknowledge that everyone on the planet has problems and issues that they struggle with everyday. The world did not stop turning when Debby received her diagnosis. I saw a woman lying in the ditch along the side of SW 13th Street here in Gainesville last week. She was struggling to get up. I was on my way to my Rotary Club lunch meeting on Tuesday. It was raining and I saw her lying in the swale along the road. She was lying in the wet grass and water in the ditch. She was obviously in distress. I pulled off the road, went back to ask her what she needed. It looked like she had been lying there on the ground for a while. (It felt a little bit like when we found Ralph Hirshberg lying on the side of the road in September 2008, not breathing.) I was amazed that nobody had stopped to help her. It was around noon and there were hundreds of cars driving by. Perhaps nobody saw her. I called 911 on my cell and stayed with her until the emergency folks came and then I left and went to my Rotary Club Meeting. I guess I am saying that I know that there are many people in Gainesville and the world who are in much worse shape that we are in. We live in a very nice and spacious house, we have air conditioning, we have many friends who are helping us, Debby now has the communication devices she needs, we have access to wonderful medical care and we have more than we need to eat. I asked one of our good friends to read thru this before I sent it out. She had some great words for me. She reminded me of the words, “Remember your brothers and sisters who also suffer.” Here are some very specific needs that we have. I am trying to be very specific as I think it is helpful for people to know what we need help with. Asking you all for help is both very humbling and also a relief. It also gets me off the hook with the ALS Case Worker who has been assigned to our case. She has been telling me to ask our friends and neighbors for help as she thinks I have been on a fast track to care-giver burnout. She is a lot smarter than I am about this stuff and it feels so wonderful to let go and let people come into our lives and help. Thank you for all you have done to help us. Personal Hygiene and Assistance. If you are comfortable with helping Debby with her personal hygiene, Debby can use some assistance in the mornings getting up and showered and getting dressed. She could also use some help getting to her various appointments if you are available during the work hours and want to help in that way. She is very open to receiving assistance and we need the help. I sometimes help Debby get undressed at night and ready for bed. Other nights she does everything on her own. Nutrition and Food- We could also use some help getting Debby’s vitamins, soup and “smooth” food into her via her mouth and her new gastric button. One of the physicians at the Mayo Clinic in Jacksonville removed the feeding tube that they had installed at UF/Shands and installed a very cool new “Button”. The Button is a lot easier to use than the gastric feeding tube. We had to use lots of tape to keep the tube in place and the tape irritated Debby’s skin. I forgot to close the valve on the tube when I hooked up the feeding tube to the button the other day. I turned to get the syringe we use as a funnel and discovered that the kefir that Debby had just drank was draining out of the tube onto the floor. We both had a good laugh. Meals- We love people dropping off meals for us in the coolers that are out on our driveway. The best thing for us is for you to drop off whatever you want to surprise us with and then call my cell(352-339-2010) AFTER you have left and let us know that we have a surprise in the coolers. There are three coolers out on our driveway. Please don’t tell us before-hand or call us on the way over… We want you to be able to swoop in, drop off your gift and swoop off without you having to talk to us…. This way of dropping off a food gift also preserves our sense of privacy and the family time that we have together. I hope this does not sound tacky or selfish on our part. One of our neighbors suggested this approach and it seems to work quite well. Picking up Groceries- Joan Stevens set up an account for us at Publix. If you want to help us by picking up some groceries for us at the Hunters Crossing Publix down the street. Contact Joan about the details on how to pickup groceries for us. I put some money in the account to get it started and gave Joan some money to put into our account when it gets low on cash. Pressure Washing Our front brick walkway is slippery with green algae and I am nervous that someone might slip and fall on it. I have put bleach on it in the past but it really needs to be pressure washed. The slippery front walk is important. I get nervous when I see someone walking up our front walkway. Firewood- There is a lot of firewood on the ground in the backyard that needs to be hauled away. I have put some of it into our firewood crib so we can have dry firewood this winter. I cut down a 79 foot tall dead oak tree a couple of months ago as part of my therapy and I never finished cutting it up and making it into firewood. There is more than I need out there, so, please feel free to take some home with you. The tree was within 40 feet of our house, so, I put plenty of ropes around it and pulled on the ropes with my pickup truck to make sure it did not hit our house. Many things in my life seemed out of control at the time and it felt great to cut down a really large tree all by myself and have some success at getting something done. I used a sling shot to get a nylon string over a limb about 40 feet up in the air and then pulled multiple ropes up high into the tree that I hooked up to my old pickup truck to make sure the tree did not hit our house. I am very proud of myself for getting that dead tree down without having to call State Farm Insurance about a claim. Finances I need some help getting a budget developed and in place. Finally, if you would like to drop a check in the mail to us to help us with the bills, we would be happy to receive your gift. So many of you have been so generous with us giving us the funds to buy the communication devices we need and giving us the ability to pay our medical expenses and take Debby on a trip when she gets better. I imagine it sounds rather tacky to say that we would be happy to receive any financial gifts. If it sounds tacky, please forgive me. Two people who have given us some money both commented that they were glad to make a contribution and that it was a nice way for them to be able to help us as they lead very busy lives and they wanted to be able to help. I know that there is much suffering in the world and that we all have our problems and issues. As my good friend said, “Remember your brothers and sisters who also suffer”. Please forgive me if I am asking for too much help. I know that we all struggle in our own ways. I am doing the best I can do to make a good life for Debby and Kate. As I read back over this, I realize that this is a really long missive and that I have a pretty long wish list. Please forgive me if I sound like a very selfish person by putting all this stuff out on the table… Please feel free to (1) Jump in and help and (2) Also please feel free to say “No Thank You”. We are enormously thankful for all the folks who have helped us financially or have come into our lives to help us with meals or clean our house or help in all sorts of ways. You won’t know what we need help with if we do not identify our needs. So, if I sound like a selfish jerk, please forgive me. I have been feeling a bit unbalanced lately and I am doing the best I can do. Please keep writing to us and please keep praying for Debby’s full recovery. Please keep coming over and helping us. We are in a new phase of our life together and we need your help. Thank you so much for all the love and prayers and help and gifts and food you have showered on us in love. We are so thankful for our many friends and the gifts you have given to us. Sincerely, John Schert (for Debby and Kate and John and Gavin the cat and Buddy and Fiona, the dogs) May 29 Debby Update Background Information. Debby "was diagnosed" as having Progressive Bulbar Palsy on April 13th. Progressive Bulbar Palsy is a form of Lou Gehrig's Disease (also known as ALS or Amyotrophic Lateral Sclerosis). ALS is a degenerative and progressive disease of the motor neurons. In the UK, they call it "degenerative motor neuron disease." The doctor we saw at Mayo Clinic in Jacksonville on May 8th (Dr. Boylan Boylan) was upbeat about Debby's prognosis. Dr. Boylan said that Debby could live for a very long time. Dr. Boylan said that vital lung capacity is a good predictor as to how well people will do with ALS. He said that Debby has good vital lung capacity. He said that many people live for 20 years with ALS. (Steven Hawking has had ALS since his 20's and he is 60-something. Albeit that is very unusual.) Dr. Boylan said- (1) The gastric feeding tube the Shands docs installed in Debby's abdomen is a real good tool for Debby to use to help her keep her weight up, (2) Debby should use her cough-assist machine three-four times each day to keep her lungs and pulmonary system healthy http://www.coughassist.com/ and (3) That Debby's attitude is huge, huge part of the equation. Dr. Boylan empowered Debby by telling her that her health is in her hands and in her head and in her attitude. He encouraged Debby to not be the disease. Progressive Bulbar Palsy I told Dr. Boylan that I had read in the literature that patients diagnosed with Progressive Bulbar Palsy often die within 11-12 months of their diagnosis. (Debby has a form of ALS called Progressive Bulbar Palsy.) I asked him why most people with PBP die within a year. He said that people with PBP usually have serious problems swallowing food and begin losing weight. He said that they become very afraid of choking on their food and that they begin losing weight because of their fear of eating and the fact that their jaw muscles, their tongue and the other muscles involved in eating become weak and get tired very easily. He also said that the caloric requirements of people diagnosed with PBP are much higher than normal people. He said that these factors all combine together and the net effect is that people diagnosed with PBP are typically not able to eat enough food to maintain their weight even if all they do is eat all day. He said that most patients diagnosed with PBP don't get a feeding tube installed until a very late stage in their disease process (too late to really be helpful) and that they don't usually use a cough machine to help clear the secretions out of their lungs. He said that most people with PBP die relatively soon after their diagnosis because they don't get a feeding tube and lose a lot of weight. Their weight loss and the disease cause them to get very weak, and with an impaired tongue and swallow mechanism, they then aspirate food (or liquids) into their lungs and get aspirational pneumonia and die. Food in the lungs is really bad. Bacteria grow easily in food that gets aspirated into the lungs.. Regarding Debby's prognosis, he was pretty upbeat... And, I don't think he was just blowing smoke... He noted that Debby has a gastric feeding tube in her abdomen and that she also has a cough-assist machine. He said if she (1) Keeps her weight constant by supplementing her diet using the feeding tube and (2) Uses the cough-assist machine three-four times a day to keep her lungs clear and (4) exercises and (5) maintains a positive attitude, that she should do well. He noted that the cough-assist machine will help her maintain her vital capacity and help her continue to expand her lungs to their maximum volume. He noted that patients diagnosed with PBP often begin to practice shallow breathing and that shallow breathing will lead to smaller lungs and a more rigid rib cage. He said that it is very important to keep her lungs and rib cage and diaphragm muscles expanding to their full capacity as this will help her maintain her vital capacity. Vital Capacity is the difference in volume between the Total Lung Capacity and the Residual Volume: ie, it is the maximum volume of air that can be exhaled starting at full lung capacity. Dr. Boylan said the key to a long life after being diagnosed as having PBP is to slow the progression of the disease and manage the symptoms. He said that the disease is relentless and that all you can do is try and slow the progression. He said you cannot make up ground you have lost. How to Keep Debby Healthy So... Bottom line is that "we" (meaning her larger community of friends and cheerleaders and acquaintences and strangers) need to- (1) Monitor Debby's weight daily on the physician's scale in our dining room, (2) Help her keep her weight up and supplement her diet thru the use of the gastric feeding tube. Debby can also ingest her vitamins and supplements thru her feeding tube as she has a hard time swallowing things. She can continue to eat normal soft food, she just has to be very focused on eating when she is eating and not aspirate any food (or drink) into her lungs as this will probably lead to aspirational pneumonia. (She still eats normal food, just no tough steak.) (3) Keep her lungs, diaphragm and her rib cage in good shape and flexible/stretched-out using the cough-assist machine. and (4) Help Debby exercise daily thru walking or yoga or meditation or light weight lifting. And (5) Encourage Debby to maintain her normally positive attitude. Debby is naturally a very positive person. Dr. Boylan suggested that she NOT focus on the disease but instead focus on living her life fully and doing things that feed her soul. Debby has recently indicated that she wants to go to Scotland to visit her father's family. Her father grew up in Scotland. He died about 15 or 16 years ago. She has many family members living in Scotland. I asked the nurse at Mayo if Debby could go to Scotland. She said Yes, Go For It!. So, we are planning on going to Scotland for 2-3 weeks in early July, after Super Summer is over. We pray daily and we remain upbeat and hopeful that Debby will recover completely from her current difficulty speaking and swallowing. Her left arm has grown sort of weak... We believe that her current speech deficit and swallowing disorder is a gift which has been given to us to teach us compassion and empathy towards ourselves and other people and help us draw us closer together as a couple and as a family. What you can do to help. (1) Most importantly, you can pray for Debby's healing and recovery. She wants people to visualize her as healthy and living a long time. (2) You can send her an email (the best email address is drdebbyharris@gmail.com). Even if you do not know her, reach out to her and let her know that you are cheering her on and wishing positive vibes and good karma.. (3) You can send her a letter telling her how much you love her and admire her. Please tell her how she has helped you or your child as a school psychologist. (She has received many wonderful letters and Thank You Notes telling stories about how Debby helped someone learn about their learning disability and learn ways to become a fuller person and get on with life.) (4) Send her some ideas about funny movies to watch. (We have NetFlix.) (5) Send a contribution to help pay for our planned trip to Scotland in July. You can make your check out to "Debby Harris", and send it to our home address- 5803 NW 67th Court, Gainesville, Fl 32653. Phone (352) 377-3354. Please indicate what you want the funds used for such as "Trip to Scotland", "Communication- Assist Equipment/Medical Expenses", "Donut Money for Debby", "Donut Money for Kate", or something like "Unrestricted/Any Purpose That Debby Wants to Use the Money For". Feel free to send the checks our home address, 5803 NW 67th Court, Gainesville, 32653 (if you send it to our home address, please make the check payable to "Debby Harris"). Debby is not so good at asking for help, especially financial help, she is more of a "giver". Runi and John are not so shy or reticent about asking Debby's or John's friends to help. Please forward this link to anyone who knows Debby. She wants her friends to know what is happening in her life. Thank You So Much For Your Love and Support We want to extend a huge Thank You to Debby/Kate/John's friends who have already made generous contributions to help purchase some very expensive voice-assist devices/equipment to help Debby communicate. We are very thankful for all the generous contributions we have received. All of those contributions have been carefully placed in a special account that Debby has the check book for. Debby personally approves any expenditure from her "Healing Account" as she calls it. We have received enough money to be able to purchase this equipment and we are very thankful for these contributions. Any excess funds in this account are being used to defray medical costs (which are substantial). We are very thankful for all the love and support that has been given so freely to Debby, Kate and John. We really are trying to see this time as a gift. We have grown much closer as a family and we have become very aware of the need to live "in the present moment". All we all have is the "present moment". Thank you so much for your love and support. Sincerely, John Schert (Debby's husband and new Executive Assistant). ps- Please FORWARD the link to this web site to anyone who knows Debby or will pray for Debby's healing. The web URL is www.drdebbyharris.com If you want ALL the details, here is some additional information- Debby's inability to speak clearly first became noticeable around the period between Thanksgiving and Christmas 2008. Her good friend Diane Farris noticed Debby's slurred speech and brought it to Debby's attention on December 22nd.. John (Debby's husband) noticed the decline in her voice but did not point this out to Debby. John was afraid that Debby might have undergone a stroke or had brain cancer and was afraid to point out Debby's speech problem to Debby. He was afraid to acknowledge her difficulty in speaking without slurring her words. He was afraid that acknowledging her slurred speech would make it more real. After hearing from Diane, Debby went to her family practitioner (the very talented Dr. Kim Davidson) about her speech problems. Dr. Davidson took a very thorough history, did a very thorough physical exam, ordered various blood tests and an MRI. Debbie underwent an MRI on January 2nd and quickly met her health insurance deductible. Thankfully, the MRI was negative for brain cancer, a stroke and Multiple Sclerosis (MS). Several physicians carefully studied Debby's MRI and all concluded that it showed no signs of cancer, a stroke or MS. Dr. Davidson referred Debby to a very talented Neurologist, a very talented ENT doctor, a very talented Speech Pathologist and has continued to follow Debby's case very closely. In the period since January 1st, Debby has been to several extremely thorough and highly talented doctors in an effort to get a definitive diagnosis and treatment for the loss of her voice. She has been to her Family Doctor on several occasions, a Psychiatrist, a Dentist (for possible TMJ), a chiropractor, three acupuncture doctors, three Ear Nose and Throat physicians, three Neurologists, a mental health counselor and a very renowned Speech Pathologist. She has undergone a great deal of testing including a barium swallow test, multiple nerve conduction studies, a spinal tap and various analytical tests of her blood and urine. All of her doctors are very very talented physicians who have spent a great deal of time taking her history and doing physical exams and conducting many tests of her nerves, vocal chords, etc. It has been a very amazing journey. We have watched as her physicians have called each other on their cell phones during her many exams and talked in front of us on the phone about Debby and how to best help Debby get better. The degree of consultation and cooperation between her many physicians has been astounding. All of her many doctors have worked closely together, even doing joint and simultaneous exams. During one exam of her vocal chords at Shands, there were two ENT physicians and a renound Speech Pathologist all in the room at the same time watching Debby's vocal chords on the video monitor via the camera they had snaked into her nose and down the back of her throat. The level of medical care which she has been receiving is truly extraordinary. I have taken many digital photographs of our journey together thru this valley. If you want to see the photographs of her journey, go to http://picasaweb.google.com/jdschert or Send an email to John (jschert@gru.net) and mention that you would like to see the photographs of Debby's doctor visits. The medical talent and expertise available to us has been the best available anywhere in the world. ALS (also known as Lou Gehrig's Disease) and Progressive Bulbar Palsey (PBP) are both neurological disorders that are progressive, not treatable, debilitating and usually are ultimately fatal. Dr. Triggs is a very renowned neurologist at UF/Shands who has published many articles on neurological disorders in the prestigious New England Journal of Medicine. He also plays the guitar in a local rock group that often plays on Sunday nights at Napolotanos, a popular Italian Restaurant here in Gainesville on the west side of town. We love Dr. Triggs and deeply appreciate all the hard work that he has put into testing Debby for Multiple Sclerosis, Myasthenia Gravis, ALS, Progressive Bulbar Palsey and other disorders.. Dr. Triggs has a wonderful nurse who assists him named Cathy Douglas. Cathy is great! We (Debby and I) both hope that Debby is going to get her voice back and have a full recovery of her voice and her ability to swallow food or drink. We remain hopeful. Even if she has Progressive Bulbar Palsey, Debby is a fighter who makes things happen. She is a very proactive person. Debby is not a "victim" in life. Debby is a "survivor". Debby is great at making lemons into lemonade and pina coladas. We are hopeful that Debby WILL beat the odds. She has a wonderful medical team and a vast army of colleagues and friends who are praying for her complete recovery. We both fully hope that Debby will completely regain her voice. Debby is also seeing an incredibly gifted acupuncture doctor (Min Chi) who is highly trained in Eastern Medicine, meditation, healthy eating, Chinese Medicine and spiritual practices. In addition, Debby is seeing a very talented mental health counselor (Leslie Sahler) who is helping Debby (and Kate and John) "be in the present", fully experience this journey, support each other and sort thru this difficult time. Many families in our church and school community have reached out to Kate to give her support. Please feel free to invite Kate over to do something fun. Kate is our highly gifted 12 year old daughter who is very intelligent and perceptive. We believe that Kate understands what is going on. This must be a very scary time for Kate. Kate has shown enormous love towards her Mom and Dad during this journey. Kate needs your continued support and love and encouragement. She has a wonderful tutor and is becoming quite the musician on the saxophone under the direction of her band teachers at Howard Bishop Middle School. Kate has an extraordinary team of teachers at the Academy at Howard Bishop School. The Academy is a very prestigious program for gifted children at Howard Bishop Middle School. Kate is receiving a great deal of support from the teachers, administrators and other students at Howard Bishop Middle School. Kate is also receiving a great deal of support from our extended family at our church, United Church of Gainesville. Debby is looking forward to Super Summer 2009 with great expectations. You can download the Super Summer 2009 Brochure by clicking on the link at the very bottom of this web site. Debby has been receiving encouraging emails, cards, gifts and letters from many of her colleagues, friends and former clients. Her clients have been sending her the most wonderful emails telling her how she helped them deal with their giftedness/disabilities/ADHD/dyslexia/aspergers syndrome/etc and become a successful person in life. Some of the emails have touched her deeply and made her cry with joy and appreciation. She loves getting emails from her clients, friends, colleagues, and fans. She especially loves getting emails that tell how Debby has helped her clients and their parents acknowledge their gifts and deficits and be proud of who they are and become highly successful people in life. These emails are gifts of grace that Debby uses to help her heal and become healthy Debby is exercising regularly, driving her car, eating healthy foods, reading books of inspiration/health/healing, getting ready for Super Summer 2009, being a mommy to Kate and a husband and friend to John and doing lots of yoga and meditation. If you have any ideas on how to get better or have stories of healing and inspiration, please share them with us. Debby talks funny and gets tired easily. Debby, John and Kate all deeply appreciate the love, food, cards, anonymously-given gift cards to nice restaurants, gift cards for Gator Dining, phone messages, emails, invitations for Kate to have a playday at a friend's house and many other expressions of love from a vast army of friends, relatives and colleagues. Many of her friends have sent her emails and letters which told her of their journey thru the Valley of the Shadow of Death and how they emerged into the light. They have reminded her that the dawn always follows the night and that every dark Good Friday is followed by the Light of Easter Sunday. We are receiving your love, prayers, words of hope and light and positive thoughts loud and clearly. Your faith, hope and love and totally loving actions of giving towards Debby and our family have had a profoundly positive impact on us. We are asking that people pray for Debby's complete healing. We believe that the loss of her voice is a gift and that she will be living to a very old age. Debby's condition has already been a gift in bringing our family much closer together. As you may know first hand, Debby is not so good at talking these days, so, we are asking people to communicate with Debby via email or the US Mail. Talking is very tiring for Debby. It must be very discouraging for her to not be able to talk clearly. Talking on the telephone is especially difficult for her. You can send a text to her phone which is 352 339 3104. If you see Debby, please go up to her and say Hello and give her a big hug and tell her that you are praying for her recovery. Don't try to engage her in a long conversation as she tires easily if she talks a lot. Don't burst into speaking in tongues or prayer for her healing as she is pretty private about her spiritual life and she may think that you have lost your voice too and freak out. She has had some bad experiences with well-meaning over-zealous Christians who have tried to heal her or save her soul. Debby has a very large image of God and she is doing just fine in her very private world of her spiritual journey. Debby's relationship with God is a deeply private relationship for her. She does not deal well with people who are intent on saving her soul. She knows that God loves her and she is doing just fine in her relationship with her Creator God. She loves going to our fabulous church each week and listening to the wonderful sermons by any of the three pastors at our church (United Church of Gainesville). She cannot sing anymore, but, she enjoys the music and loves the love that flows so freely at UCG. Debby has indicated that she wants to go to Scotland and visit Gavin's old stomping grounds. We hope to go to Scotland in July for 14-21 days. We don't have the funds to make this trip. If you want to make a contribution towards making the trip possible, please feel free to send us a check. All contributions large and small are greatly appreciated. We have received a lot of contributions to enable us to buy some expensive communication aids for Debby. Our address is 5803 NW 67th Court, Gainesville, Fl 32653. Please send your emails to dharris@gru.net Kate's email address is kschert@gmail.com John's email address is jschert@gru.net We remain steadfast in our faith, hope and trust in God's love and healing energy and in Debby's full recovery. Please help us continue to find the gifts in this journey. It is a marvelous and difficult journey. It is definitely the Road Less Traveled. Thank you so much for your support. Sincerely, John Schert Debby Harris Kate Schert (age 12, Kate turned 12 on April 15th) Gavin the Cat (also affectionitely called "Cow" by Kate) Buddy and Fiona (our chocolate labs) All of her client files have been removed from her offices and taken to our home where they are in safe storage under lock and key. Debby is not accepting any new clients at this time. She is referring all new clients to Kathy Funke or Lisa Shiavoni. Both Kathy and Lisa have school psychology practices here in Gainesville and both Kathy and Lisa are highly recommended by Debby. Debby has known both Kathy and Lisa for many years and holds them both in very high regard. If you are an existing client and need to communicate with Debby, please send an email to dharris@gru.net or jschert@gru.net Debby's husband (John Schert) is her new Executive Assistant. If you want or need to speak to John, you can call him on his cell at 352-339-2010. John can relay messages to Debby and call you back with Debby's communication. John is acting as a conduit for information from her clients to Debby and also for communications from Debby to her clients. Debby is not able to speak on the phone as it is very hard for her to speak clearly and be understood. She is having difficulty getting her vocal chords to do what she wants them to do. Her cognitive abilities have not been impacted and she is as sharp as ever. If you see her at the tennis courts or the grocery store or at church, please go up to her and say Hello. Please reach out and give her a hug or squeeze her hand. Please see if she wants to engage in a conversation. Her speech clarity can vary a great deal from one day to the next. Her voice might sound a bit strange and different, but, her heart and mind and soul are still the same beautiful person she has always been. You might be surprised by her voice as it is very different from what it used to sound like. If you are looking for the Kids and Sports camp at Westwood Middle School this summer, please click on- http://www.kidssportsandfitnesscamp.com/ If you are looking for information on Kaydie Vistelle's super cool Summer Language Institute at Westwood Middle School, please click on http://www.funlanguagesgainesville.com/ You can email Kaydie at kaydiev@gmail.com |
