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He Raced Without Me and We Both Found Freedom

Jamie Sumner
Special needs mom, author and blogger
07/08/19  9:00 AM PST

It was the very end of the academic year and my son, Charlie’s, elementary school was having a fundraiser. It was a “fun run”, a relay race where laps count toward money raised for technology in the classroom. I read the emails enough to understand that it was during the school day, parents could attend if they wanted, and I needed to turn in his shirt size.

I did all that was required, but I didn’t sign Charlie up for the race because we are in transition between a powerchair and a manual wheelchair at school. His cerebral palsy is confusing, or, to be more accurate, Charlie is confusing in that some days he is more than willing to roll himself and others he prefers to be the king of the castle and have others steer him around. I wasn’t sure which chair he’d be in on race day, so I figured I’d let him sit this one out. He’d have just as much fun watching and cheering.

The day of the race was ominous with dark clouds looming and wind whipping the new buds off the trees. As Charlie road the lift on the bus and we waved goodbye to each other, I mentally patted myself on the back for not throwing him into the chaos of a Fun Run that wasn’t panning out to be all that fun.

It wasn’t until that night, as I peeled off his “Change the World” race day t-shirt and lowered him into the bath, that I noticed the little black specks on his back. They were tiny little pinpricks of ink that took an extra round of loofah-ing to remove. I was used to finding paint under his nails or on his elbows and once, behind his ear. His back though, that was new. After he was in his pajamas for the night, I did some investigating. On the back of his Fun Run shirt there was a grid marking laps completed. There was a check on every square, hence the black marks.

It turned out, Charlie had raced thirty-five laps.

Half the mystery was solved, but I needed verification. Luckily, I have the kind of relationship with his SPED teacher that I can text her at odd hours of the night.

Me: Did Charlie race today?!

Her: He did and he did great! All the kids raced : )

Me: …

Me: Heart emoji

Apparently, I hadn’t understood the Fun Run directions at all. I didn’t know that every kid raced, no matter what. His aide rolled him along with his kindergarten class and he had a blast, the wind whipping his hair and the parents and older students standing along the fence line shouting “hooray!” and “keep going!”. And I had missed it all.

I sat on the floor with Charlie sitting crisscross applesauce between my legs and I kissed his wet head and let myself regret the missed moment. His first race! In his wheelchair! Then I leaned back against the side of the couch and felt, instead, relief—that all this could and would happen for him with, or without, me. It’s a strange sensation, that letting go of personal responsibility over every single thing in Charlie’s life. It’s a lightening of the load, but also a little disorienting, like extra oxygen flooding the air.

As parents of kids with special needs, we are used to our presence as a necessity for every big and small thing.

Events just don’t happen without us. At the same time, we all wish and pray and work towards independence for our children. We see two paths: 1) we negotiate all the minutiae of their lives, or 2) they begin to take the reins. But what if there’s a third path? What if there are other people who can facilitate our children’s independence from us whether or not they can be fully independent on their own? This is freedom too, for them and for us. And even more so because it feels like a gift, something we did not earn but has been given to our family nonetheless.

Next year, I will run the Fun Run with Charlie. I will fundraise with the best of them. I will READ THE DIRECTIONS on all school emails. At least that’s what I tell myself. But who are we kidding? I’m going to miss something. It’s impossible not to. And when I do, it’s comforting to know I have people to step in, to run the race, literally and figuratively, in my stead.

child with special needs

Jamie Sumner is a special needs mom and author.

Discover her new book, Roll with It.

Follow her on Facebook.


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