Rest in peace our beloved John D. Harris 1969-2011

I had hoped I would never have to write this blog entry and I must say that it is unequivocally the hardest thing I've ever had to write. There have been times over the past couple of years when I have procrastinated with updating this space and it has usually been because I simply couldn't find the words. The same has been true since July 29, 2011 at 5:00pm.

The initial thought with starting this blog was to allow everyone to have the perspective that we had. We wanted people to feel as if they were walking alongside John in his journey to survive and we wanted everyone to feel included in his healing process but we knew that logistically it would be impossible for us all to be there...there isn't a hospital room (or hospital for that matter) that would be big enough to hold all of the folks who loved John or felt close to him. We knew that John was loved by so many but we really had no clue just how many. There hasn't been a time in the past two years when we haven't gotten emails, calls and inquiries daily asking how John is doing and if there was anything that could be done to help. We will never be able to thank you for those inquiries and I know that personally, it helped give us hope and perseverance at times when we had none.

After a few days, I began enjoying writing this blog and sharing the events of John's path. There were so many times when I wrote through tears and my heart ached to have to share the bad times but I always looked forward to getting to the computer to type in the good stuff too! It was a cathartic process for me and it felt good to be able to honor John by getting the information out.

I will never be able to express how much we appreciate everything that each and every one of you have done. We appreciate your thoughts, your prayers and your steadfast love for John and for us. I'm not sure how we would have made it through this process without you.

I feel an obligation to let everyone know what happened at the end of John's life. I think because you have all been with us through this process and because this process now has a conclusive ending allows me to share a perspective that most might not have experienced. It's not that John's death was totally unexpected but in some respects the timing was unexpected. In May, John began experiencing painful bouts with dystonia. Dystonia can be caused from heredity or from a traumatic event and John's was caused from the latter. When his body went without oxygen after his heart attack and then again the next morning, or at some point during these hours, dystonia set in. At first we noticed some muscle stiffening but it didn't seem to cause him a great deal of pain. He continued to progress in physical therapy and for a few months, it looked as though he might be able to stave off the horrific side effects. Unfortunately, as the days passed, it became a battle just to stay at a plateau level and more recently, John's body became unable to keep the side effects away. It started with a rigidity in his hands and legs and before long, he was having great difficulty standing, getting in and out of bed and he required assistance with all tasks. John lost the ability to eat on his own and wasn't able to walk for any distance. Eventually, even swallowing liquids became impossible and in a final blow, John lost his voice. He could say a few words and always said Holly and I love you but we could tell that it took a huge amount of effort to speak. He had difficulty lifting his head and there were times when we wondered if he had lost his will to survive.

While in nursing care, and since John's heart attack he has rarely been left to be cared for hospital/medical staff. We learned quickly that we needed to oversee all aspects of John's care and most recently, this involved hiring a full-time caregiver in addition to nursing home or hospital staff. Frankly, we just never felt like any level of care was good enough for John! Holly and John's family took turns by his bedside and the hours got long. Toward the end, John was in so much pain, medications lost their effectiveness. He was given large dosages of powerful pain medications but they didn't seem to help with the pain. I can tell you that seeing someone you love in so much pain for such a long time is one of the hardest things ever and we prayed for a solution. We were okay when John had been kept comfortable but we were absolutely distraught seeing him having so much difficulty and being in so much obvious pain. He was so tough through so much but we could tell that the pain was excessive. He would sleep for a few minutes at a time and then wake up writhing in agony. His physicians tried upping the dosage on his baclofen pump and combining this with pain medications but the only time he was comfortable was when he was asleep.

After being in the hospital about a month ago, he was released back to the nursing home. Within a few days, the pain got worse and soon, Holly made the decision to get him back to the hospital. The next few days were spent trying to keep John comfortable to no avail. Infection spread throughout his body and his doctors couldn't pinpoint the cause of the infection. On Wednesday, July 27, John was not as coherent as he had been but we were relieved that he was at least doing slightly better and seemed to not be in pain for several hours at a time. At this point we were willing to trade off being able to fully communicate with him for him to have a good level of comfort. This period of seemingly feeling a bit better didn't last.

On Friday morning at approximately 3:00 am, John began vomiting and had to be intibated. He had been unable to cough to clear his chest fully and the fluids had built up. We all rushed to the hospital and were told that John had severe pneumonia and things didn't look good. They had to remove the tube so that John would be comfortable but doing so might cause him to do worse or possibly die. We knew that it was time for John to make the decision about his path. We knew that with the tube in, John was miserable and in severe pain so the family made the difficult decision to put it into God's hands and remove the tube. As soon as the tube was removed, John seemed instantly more comfortable. We had some hope that he would possibly get better. We soon realized that John had all along been fighting on our behalf and it was as if he was asking permission to let go. Each of us in turn gave him that permission in our own way and Holly crawled into bed to hold him. The last word he said was, "Holly" and then he closed his eyes and finally gave up his fight about two hours later. He was comfortable at the end and seemed so peaceful. As we stood around him, we knew that John was no longer in pain and that he had continued his journey. John always trusted his faith and that helped us so much at the end. Knowing that John wasn't afraid to die and actually believed that there was so much more to his eternity was a great comfort to all of us. There aren't a lot of people who die surrounded by people who love them but I can tell you there was love in that room and I can tell you that we believe that John felt that love. He was not in pain and seemed more relaxed than he had been since June 2009. It was as if in his last breath he asked for us to help him let go and we did.

Holly wanted to speak at John's funeral. She felt so moved by the past couple of years events and wanted to share her experience. For those of you who were unable to attend the service, I am posting what she said here:

It has been said that the good Lord doesn’t give you more than you can handle and I stand before you today as proof that that is absolutely true.

Over the past couple of years I have learned a lot, cried a lot, worried constantly and almost always wondered what the end result of all of this would be or what John’s future held. Unfortunately, we have lost a man who has endeared himself to many and whom I will greatly miss for the rest of my days. I will miss his amazing zeal for life and of course…his sense of humor!

Today is about celebrating who John was and the life he lead and those he touched along the way.

John was an amazing person and a great husband. He was kind and gentle and loyal. We were married for 14 years and dated for 4 before that so I feel so incredibly blessed that I got to be a part of his life. He was my fishing buddy and I loved being on the back of his Harley. We loved spending Sundays sitting right there, enjoying church services. His sense of humor was amazing and he could make me laugh until I hurt but you already know that!

Who John was to me and to those who knew him best, was a man who was about the positive parts of life. He never judged others, was accepting of all, loved life and lived life to it’s absolute fullest. He loved God and was faithful to the point that he felt drawn to give to those around him in a way that exceeded generosity.
Even at one of his darkest moments after his father had passed away, he still felt compelled to thank God for the years that he did have with his dad. In a letter he wrote to speak at his father’s funeral, he said, “Why Lord have you taken my father at the young age of 59”…and we want to ask why God took John at the even younger age of 41. We all know that John gave, loved and lived each of those 41 years, and while to us, it seems so short and we are sad and missing him so much but we feel the blessing of the time we had knowing him.

I have asked God over and over what the purpose of this tragedy is. He has revealed many things to me and it has changed my heart for the better forever.

I’ve learned that life is precious, time flies and unspoken words remain unspoken.
Actions speak louder than words. I have learned that those who love me and love John, do so unconditionally and I know that an appreciation for those close to us is something that should be reiterated every single day.

Tell those close to you that you love them every day and think of ways to show them that love.

Possibly the biggest thing I’ve learned is to open my heart and appreciate the most difficult times in life. It’s shown me to love people today and love them tomorrow and forever regardless of how their lives change or how their health changes.
To try to express in words the level of appreciation I feel for everyone’s support over the past 787 days would fall short. I will live the rest of my days remembering the way that my family, friends and those I work with have supported us. We wouldn’t have made it emotionally if our family and friends hadn’t been there to support us and we certainly wouldn’t have made it emotionally or financially if my work environment had not been conducive to me caring for John at the level they have enabled me to do so. Your thoughts and prayers have sustained and provided comfort to me at the darkest times in ways I will never be able to express.

Specifically, I want to thank my dear sister Melanie for without her this last 2 years would have been impossible. Mel; your unwavering support, wisdom, dedication, and relentless time and energy have helped me beyond words. You constantly picked me up when I was down and carried me daily when I felt like I couldn't go on. I thank you from the bottom of my heart-my guardian twin angel.

John gave a Christmas card to his mother not long after his father passed away in 2001. In it he wrote, “Life is really non-existent as we know it …Life STARTS when we graduate to the next level.”

John graduated!!!

If each of us leaves here and does what John did, the world would be a better place. I brought some roses today and as you leave the church please feel free to take one and bring it to the cemetery. I had hoped that each of us could whisper a final wish, thought or prayer into the rose and place it on his casket at his graveside. Our hope is to blanket him in the love of our thoughts and prayers for eternity.

John would want each of you to know that he is astounded and appreciative of every single one of you. He would want you to know that he is in heaven and relied on his faith throughout his life. He would be amazed to be looking out over this fine group of people and knowing that they are here to show love and honor to his life. He would want to hug everyone here and tell you thank you because as much as you think he gave to you, he believed you gave him exponentially more.

At the end of every conversation, John would say, “God bless you”. It was as if he felt the need to share his faith and protect you in some way. I cannot think of a better way to honor John’s journey than to leave you with those words……God bless you.

God bless you, John…I love you.