First-Day Jitters

I’m sitting here looking through a Welcome Book with pictures and “About Me” info on all of Charlie’s classmates-to-be. This is my second time sending a child to Kindergarten, but it may as well be the first. Duchenne makes everything different. Charlie is ready. Me? I’m not so sure.

We have the most amazing team ready to greet him on his first day, with a thoughtful IEP in place to set Charlie up for every success. He has the fierce personality to take on challenges and magnetically attract friends. Still, I look at these little faces about to join him in the launch of their school careers, and I just think, what if someone is unkind? What if they notice Charlie’s differences and treat him, well, differently? What if his spirit somehow breaks over the list of things he can’t do, which is only going to grow longer with time?

Living with Duchenne is a study in contrasts. We want Charlie to have accommodations, but not be singled out. We help him with everyday tasks but desperately hope he can learn to live independently. He often looks like a regular five-year-old boy, but I see the fibrosis in his bulky calves with x-ray vision. He lacks physical strength but I don’t know if I’ve ever met a sharper mind. 

Most parents meet the start of Kindergarten with a mix of emotions: anxiety, wistfulness, uncertainty, excitement. It’s not unusual for me to feel all of those things. I just wish I could watch my boy climb the stairs of a regular bus and wave to us, then ugly cry for the rest of the morning like all those other moms will. I wish the unknowns of Charlie’s school experience were limited to whether he likes his teacher or what to make him for lunch. Please, I want to tell all these sweet faces who will soon become acquainted with Duchenne muscular dystrophy, be kind to my boy.