A sense of perspective

Tonight as I've been putting away the Christmas stuff, remembering how much Trevor loved it when I put it up just over a month ago, I've been overwhelmed with grief. I want my boy back. But then I make myself look at the songs done about the end which are on his site and on my computer. I see the pictures like this one here and realize that if Trevor had survived this is what life would have been like for him. Life wouldn't have been what it was just a few months ago when we went to Disney World or even a few weeks earlier. His body had done all it could within the limits of the dreadful disease that he had. For a lot of the men with DMD a ventilator and a tracheostomy is a great solution and keeps them going many years. But, Trevor wasn't like them. He was still an infant or toddler cognitively and hated to have stuff around his mouth. He couldn't have tolerated even one minute longer of the tube in his throat. I know that's why he was crying shortly after we got to Canuck Place. He wanted the tube out. I wish things had been different. But they're not. A friend who is a nurse just called, just at the right time. And, we went over the symptoms he'd been showing the weeks before this all happened. His body was already starting to shut down. His heart was likely getting weaker but until he actually got sick and his breathing got so difficult it wasn't having to work that hard. The illness-or just the progression of his condition is what pushed his heart to the limit.

If I have to go into his room to get something I try not to look at much but I do keep noticing his afos (foot splints) lying on the floor. At first they made me sad but then I realized that he doesn't need them any more. And, I remember how much he hated them. He'd always wiggle his feet when I took them off. He isn't limited to trying to get people to understand what he wanted them to do with his body that wouldn't move the way it used to. He's free. He's not here which is painful for me, but he's free.