I’m at the point where I can understand Stockholm Syndrome which is where a hostage or captive develops a bond with their captor. For many years I’ve been held in the grips by Duchenne muscular dystrophy and I’m not implying that I have any fondness for the disorder, the opposite is more accurate. More simply said, it is when you become accustomed to doing things a certain way or are adjusted to a particular ‘normal’ any change in your life or routine is unwelcome.
I learned many things watching how my sons dealt with the way DMD altered their physical ability and their lives. Close to the time of diagnosis parents often express fear in their sons needing a wheel. Often they refuse to discuss this with their sons and I’ve been told by a number of parents they prefer their children not be exposed to older patients using a chair. Viewing this through Matthew and Patrick’s acceptance helped me more fully realize there are more important things to fight for. Alice and I were always open with our sons about what the future held thinking it was better to deal with this early than being forced into a situation where someone else ‘spilled the beans’ or worse, giving our sons a reason to question our credibility. Matthew and Patrick transitioned from walking (At the end you really couldn’t call it that; taking two steps to fall into a heap isn’t walking.) to using a wheelchair with a sense of newfound freedom it made it easier for us. Watching them regain the ability to explore their world was enough for me to learn the time had come.
Even as Matthew got older and his care became more complex he appreciated what we were doing, yet he never allowed his inability to perform many activities to change his positive outlook. Matthew’s CNA would hesitantly ask me if I wanted to lift him from his wheelchair to his bed many evening as it was quicker. Even when tired and I might not have felt like it, I always lifted him. In my mind it was a way to hold my son tightly, sort of a stealth father-son hug. I still transfer Patrick this way and for the same reason. We all need our silver linings no matter how simple they seem to others.
Sleep is still not a friend. I guess so many years of getting up multiple times to turn Matthew in bed took its toll. Patrick and Matthew always laughed about the times at camp or when we traveled and I got up to turn Matthew and in the darkness try to move Patrick. Dads are a great humorous target for their sons.
Matthew would have turned 21 in mid-April. Alice and I planned to take him to a favorite restaurant to buy him his first beer. Both he and Patrick were mindful that the law applied to them. The few times I offered Matthew a small taste of beer he reminded me he wasn’t old enough. Always the good citizen.
All these thoughts keep rolling through my mind as I continue this journey. The decade I lived in Florida and Georgia I regularly heard the expression: “Better the devil you know”. Loosely translated it refers to people’s ability to accept the challenges in their lives while not sure how others deal with their difficulties. Every time DMD left another mark on my sons I marveled at their ability to accept the new ‘normal’. My sons simply rose above these changes. It amazes me how much I learned to accept.
Alice, Rachel, Patrick and I are learning our new normal. These are filled with a variety of challenges. Our first night having dinner together as a family without Matthew didn’t go unnoticed. We’re aware there are more days ahead like this. Fortunately we have each other when needed. As time marches on I’m now learning that I’ll miss those little ‘inconveniences’ that Matthew and I shared. Maybe I am held hostage by DMD, but Matthew was with me and Patrick still is which makes it all worthwhile.