As I think about how much time has passed since Clayton, it's hard to believe he would be 15 months old. I'd like to say he'd be running all over the house, getting into things, but he just wouldn't have. It's hard to think about really. My son wasn't like normal children. His disease would not have allowed him to run around making my house a mess. It also wouldnt have allowed him to crawl, drink from a bottle, breath on his own, say momma or dadda.....It's scary and sad to think about what our lives would have been like with Clayton as a 15 month old. Most people would have no idea, but as Mytublar Myopathy parents (MTM) I am quite aware of what we would have be up against. And thinking about that sure puts life back in perspective. I am sad for Clayton that he got the fate he did, but I know that life with MTM is hard. For the child and for the family. It would have been filled with lots of terrifying moments and hard days. I know there would have been some really great days, but there would have been many many hard days. I know in my heart we did the right thing with letting Clayton choose heaven, but some days it's tougher than others. We knew we had to let him choose his life path, but we desperately wished his life could have been given to him with health, but it hadn't. Heaven was the life God intended for him. But that doesn't stop me from wishing it hadn't been and thinking about what life would have been like. Life is unfair, it sucks that he had to die, but to dwell in that, would be unfair to Clayton, and to Kendall for that matter. Like Marcus always says, "Clayton didn't want this to defeat us" & with that saying, I look back at the last 15 months and am in aww of all the wonderful things that have happened and know that because we thought of our son with a smile on our face and courage in our hearts, we are where we are today. And to think of what the future can bring.
I miss you & love you so very much Clayton, thank you for opening my eyes to life & blessing us.
