Resiliency

Today Anthony used his wheelchair to get around the house for the first time. Up until now even though he’s slowing down he always walked in the house, the classroom, and any other small space. This morning he fell getting into the shower trying to sit on the shower chair. And I was holding on to him. He has a big red spot on his hip but luckily that’s all. This is the time in DMD where the boys are trying to stay on their feet as long as possible and there are more and more falls. Often times, those falls result in broken bones. It’s such a hard time for this disease because you really want to keep them moving as long as you can, not only for their overall health but you also add to the timeline of progression. However, it starts getting very tricky as to when to let go and let them sit down.

Whenever he falls, after getting upset for a brief time (sometimes a minute, sometimes just seconds) he always reminds me how tough he is. “I’m tough, right Mom?”

But today, I understood when he asked if he could just ride his wheelchair into the kitchen to eat because it was just too far. 

The other night when I was talking about how hard it is to decide whether to push him to keep walking or let him sit, my boyfriend reminded me of something I’ve always said in the past when we discussed this time coming. In my grief, I had totally forgotten my own wisdom and intuition. I have always said, having watched so many parents go through it, that when this time came I would just listen to my son and let him determine the course. I have to remember this isn’t about me or anyone else. This is about Anthony and today he is the expert. As parents, we tend to think we always know what’s better because we can see the next ten steps down the road. But maybe this time it’s best we don’t. It’s best that I just honor and support him because I can promise….. this time, I don’t know what’s best. I have no idea. 

I decided the theme of this week’s hike will be RESILIENCY. This is the lesson I learn from both my sons on a regular basis and was reminded of once again in the bathroom this morning. “Yes, buddy you are tough. You are the bravest boy I know”.