Three distinct Days
There are momentous days in each of our lives, I want to share three of those days that have shaped our family.
Sept 2, 2000-
The anticipation was palpable, this was our first child, first grandchild on both sides of the family. We knew he was going to be a boy. Jill had checked into the hospital on Friday morning and finally on Saturday early evening she had a c-section to bring Kyle into this world. I remember the first time I saw him, he was being held by the nurse and he was scrunched up with his eyes closed. He was perfect, it was exciting, tiring and the beginning of an adventure. We were in our mid-twenties, and we were ready for this new stage of life with kids.
This was just the beginning, the possibilities were endless. Sports had played such a huge role in my life, and I was positive that they would play an integral role in Kyle’s life also. The first thing we did as father and son was watch a football game. I remember it well it was opening day of the season. It was the Bears against the Vikings. Cade Mcnown had one of his best days as a pro. The Bears won and life was good.
At about six months we knew something wasn’t right. Kyle was a great baby but he wasn’t functioning as a “normal” baby. He wasn’t rolling over, he wasn’t sitting up on his own. Throughout the next couple of years we kept hearing the word delay. Kyle is just delayed, it wasn’t anything to worry about, with physical therapy he would catch up. No one seemed overly worried, so we were patient. When he was two and a half we decided to take him to Riley’s children hospital in Indianapolis, during that visit we had a blood test with various other tests done. It would be about a week before we received the results.
A Wednesday in Febuary of 2003-
It was a typical morning. I had left around 8:30 for work, and had been at my desk for about half an hour when the secretary told me Jill was on the phone. Jill calmly and softly told me the blood test came back and the doctors believe he has muscular dystrophy. The first question was “what does this mean? Jill said something to the effect of she didn’t have any idea. My head was spinning, and immediately I did an internet search of muscular dystrophy. It didn’t take long for my world to crash around me. As I sat in my office at the church I worked at, I sobbed. I was sitting in a place where people find hope, peace, and comfort but I was feeling despair, hopelessness, and anxiety.
We didn’t initially know what type of muscular dystrophy Kyle would have. There was hope in the initial stages he would something other than Duchene. We quickly learned that Duchene was the most common form of MD and it was likely that Kyle had this. I didn’t know all the implications but I did know that this would change life.
There were good days and bad for the next few years, I didn’t know how to respond or react. I am not sure I still know how.
There was a loss, Kyle wouldn’t be the person I thought he would be. There was so much gut wrenching pain in that, each time it would hit me of things we wouldn’t experience together it would be a new wave of emotion.
There is a huge difference between existing and living. For much of the last 8 years our family was breathing and existing but we weren’t living. I was disengaged most of the time, trying to escape reality by being over involved in work, projects, and leisure enjoyments. There were many titles and roles I was comfortable with but father of a special needs child was not one of them. I didn’t have a road map for what I was supposed to do or how to act.
Then the summer of 2011 came. There were two catalytic moments that changed our (specifically my) life and our relationship to Duchene’s. The first was going to a family camp put on for special needs families by Joni and Friend’s ministry. Our church had tried talk our family into going for 3 years. I had drug my feet and not wanted to do it, I was very uncomfortable with the thought of going to a place where I would have to face reality for a week. I was voted down 4-1 in our family vote for attending the camp. It was that week that began the reengagement for me. Seeing and meeting other fathers who had dealt with the same moments I had was therapeutic. We laughed, cried and bonded so quickly over our common crisis in life. Seeing these examples was what I needed.
The other moment that changed our perspective was when we received a call from a local foot doctor who asked if he could have Kyle do a sprint triathlon with him. We(I) had focused so long on Kyle’s limitation that we had not allowed him to live life. The triathlon opened up possibilities that we never had thought of before. After the triathlon Kyle began asking to do activities like sky diving he had never known before. Our conversations began to center on how Kyle can do something rather than lamenting why he couldn’t.
Today is such an important day in Kyle’s life, because we can’t wait. We can’t wish that he didn’t have this disease, we can’t feel sorry for ourselves or for Kyle.
Matthew 6:34- “So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today.”
We can’t wake up every morning scared of the future, we can’t dwell on all the horrific moments, but rather have peace in the moments of today. Today is a great day, we have the privilege and opportunity to spend it with Kyle. Each day brings laughs, tears, moments that will never be forgotten.
I have missed out on moments in Kyle’s life do to my fear and trepidation about his future. No his life didn’t turn out the way I expected but no child’s does. I believe that Kyle is fearfully and wonderfully made by a creator who knows and loves him. Jill and I have been entrusted with Kyle’s life and as difficult it is we have made the choice that we are going to live one day at a time and not allow Duchene’s to have the last word in our life. Yes it is a reality, but it is not going to steal our joy, peace, and break up our family. Kyle will have a great day today and that is what we are going to focus on.