It's been a long while since I have posted, in one way it's because we have been living and loving every moment and in another way it is because life is really hard to put into words. Wyatt has been pretty stable but over the past week I have noticed him saying mom I'm STUCK more and more often. It's hard walking into his room and see he is STUCK on his belly because he can't get the left leg to where he wants/needs it. We as a family have adapted so much over the past year, the newness of that left leg getting STUCK is a hard pill to swallow. I know what comes next and see where this is headed and it is scary. I can feel the fear of what is to come and I am hoping that I have the strength to get through the next phase. I know that I am not alone in the journey because our village is growing and though it isn't always easy I believe we have support even when it gets REALLY hard.
This summer has been different, mostly because of the newest neighborhood friendships I talked about in the last post. But with new relationships comes new challenges. And as a DMD boy who doesn't see consequences until long after the fact this mama is tired and worried. Being 1
6, he should be out and hanging with friends, so we have opened our home and our hearts to some pretty good kids. We have allowed his friends and our friends to drive Wyatt in the van and they have done so happily to help him be more included in the teen life. Unfortunately knowing how Wyatt's previous friendships have ended, I am STUCK thinking these friendships won't last so instead of being happy in the moment, I find myself worrying for what is going to happen next, now not only physically but also emotionally.
What comes with age, a disability, and a funky way of seeing reality there are the challenges of being accepted. The want to be part of something bigger and the want to be like others is hard to understand when you aren't like them, especially when Duchenne continues to take things away from you and makes you act differently than others your age. The need to tell stories to feel cool seems like the easy way to be like others but as he learned recently it eventually backfires. It's hard for someone like Wyatt to understand because he is STUCK thinking that he is not good enough. Which makes it me wonder how do I help him to understand he is an amazing as he is and he doesn't have to make up stories to be cool because others already know he is?
I am so happy the PPMD Connect conference is this week and we will be surrounded by so many others who feel STUCK in their way of thinking and with the DMD situation we call life. At least we will be all together for a few days to feel better about our "normal" and recharge for the rest of the year so when we feel STUCK we don't stay there we are able to feel it an move on.
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