I was in the car heading to a meeting when I got the call. Peyton fell down the stairs at school and hurt his elbow. They didn’t think it was broken. Phrases like that send terror into the heart of a DMD parent. Our kids don’t heal like others. Breaking a body part can end their movement in that area. We are especially concerned with the legs as this could cause him to enter the wheelchair phase early. We are told that DMD boys should not be put in a cast but have a pin inserted if there is ever a break. That requires anesthesia which could also be harmful because of the lung capacity. I am still unclear on all the rules/suggestions so it’s even more terrifying.
My first question to the nurse was “why was he running down stairs?” She said “I knew you were going to ask me that.” Stairs are a no-no for him. He knows that but as I told the nurse – “He is 7 and doesn’t always make good choices.” I spoke to Peyton and hearing his voice always gives me relief. He told me later he was embarrassed when he fell. Breaks my heart because that won’t be the last time. I had the nurse ice it and call me back in 30 minutes.
He turned out to be fine but I am always so scared when the nurse calls. This disease is a ticking time bomb. The symptoms can be subtle or come on like a freight train. I am so unprepared.
The nurse and teacher told him that he shouldn’t be playing on the stairs. I told the nurse not to make it sound like he is in trouble. Again, he is 7 and wants to play. I can’t blame him. This disease is going to take so much from him. I don’t want him to feel like he did something wrong. He didn’t. I didn’t…but It’s difficult for me to process that the baby I nurtured and gave life to is going to suffer.
He showed me his Boo Boo when I got home.
I think he will be fine..this time. Not sure I will ever be fine again…until they can cure my baby.