All right, all right. It’s been too long since I put words on a page. I swear I’ve tried, but everything sounded so trite that I wanted to punch myself in the face. But my hands don’t work. So no punching or posting.

Scarlett was trying to drag Otto around yesterday when he wasn’t listening to her.

“Use your commands, not your hands,” I said, instantly inventing a genius rhyme that has probably already been invented. It made me think of something my friend Stephen wrote to me when I was feeling particularly down about not being able to run my household in a more physical way. I’m not talking about inflicting bodily harm on the child or the dog, but simply having the option to move things along with more than just my voice.

Stephen reminded me of a passage from the Ta-Nehisi Coates book Between the World and Me. If I could flip through my copy right now, I would get the quote right. But essentially it was the author telling his son that words are more important than hands when it comes to raising a child. If all I had over you were my hands, he writes (and I’m pretty sure I’m getting this right), then I had nothing at all.

I guess a paralyzed parent is the perfect embodiment of that statement. Of course, Coates is writing from the perspective of a black man trying to keep a black son safe in this world. Our situations are not the same; nevertheless, his words spoke to me and to Stephen, who is also living and parenting with ALS.

In what I consider to be a superhuman act of hands-off parenting, Rob and I sent Scarlett off to the Midwest for two weeks without us. She stayed with my parents and visited much of my extended family, announcing that seeing my nearly 92-year-old grandmother was a highlight because “she has so much candy.”

She explored every pool in the area, road the L downtown, learned how to play ping-pong, and saw fireworks at my old high school. She spent warm summer nights running around with her cousins, chasing fireflies that glowed like tiny torches, and taking quick cover inside when the mosquitoes descended to break up the party. I know some of this from her stories, and some of it because I might have been a wee bit obsessive with the checking in. I wanted to let her have this vacation without her mom’s face constantly showing up in the background on someone’s phone, but if it had been a possibility, I would have watched the entire trip unfold like a movie.

I seriously need to get my own life.

While she was gone, I slept in and read books, and tried to ignore the fact that there was nothing to break up the day. Rob was working and traveling, and sometimes Otto and I just looked at each other and I wanted to burst out laughing and ask him how the hell did I end up here with just you?

The night Scarlett got home, she waltzed in the front door wearing jean shorts and an orange tie-dyed shirt that exposed her brown shoulders. She flashed her biggest jack-o’-lantern smile and came running to throw her arms around us. Otto got the most hugs by far, but she snuggled with Rob on the couch for a while and slept with me all night. And just like that, this big event that we had been so excited and nervous about was over, almost as if it had never happened. Except for the mosquito bites that dotted her arms like firework sparks, proof that she had been to another world and then come home again.

Share this post on your social platform