fbpx

Maya DiMeo is all of us some of the time: Mother’s Day Reflections as Speechless is canceled (from a Heart Mom)

This week, Speechless was canceled. I was… well, speechless.

If you haven’t heard of the show or watched, the description of it is thus:

Maya DiMeo, a wife and mother, is fiercely protective of her husband, Jimmy, and their three children, Ray, Dylan, and J.J. — who has a condition that leaves him with unique mobility and communication challenges. While Maya’s mama bear instinct may be one of her most admirable qualities, it’s not without its drawbacks and sometimes the injustices she sets out to make right end up being all in her head. Together, the family members work to make a new home for themselves and find the right person to come in and give J.J. a voice of his own.

Speechless CastMaya DiMeo was the mother I often was. She was the mother I often had to be as the mother of a child with a complex congenital heart defect.

I had two years with my daughter before a cardiologist let me know the “probably nothing” heart murmur was Aortic Stenosis. Open heart surgeries were an every few years event in our family, the last being so long and so complex that despite being in one of the best hospitals in the country (which we traveled to, thank you Ronald McDonald), my child emerged with just enough damage to her brain that her personality changed. So did her capabilities.

This year, I’m the mother of a twenty-one year old but in many ways, I’m not. My child is disabled. You wouldn’t know it to look at her, honestly, but if you ask her to do three things in a row? You have about a 50% chance of not getting the third done. When she forgets, her frustration will overcome her with sadness, anxiety, anger—but I quickly joke with her that since her heart rate is so much slower (she has full heart block and depends on a pacemaker) she’s just taking everything in life slower.

She’s my only child. Unlike Maya DiMeo, I don’t know what it’s like to parent a child without a critical illness. Like Maya DiMeo… Well, in a lot of ways, I’m just flat out like Maya DiMeo. A lot of us are at least some of the time.

This show gave us a window to laugh uproariously at ourselves.

I-n-s-Inspirations“I-n-s-Inspirations”, an episode where JJ and Kenneth wind their way through the city taking special treatment (and free treats) thanks to JJ’s disability, made us nearly fall off our chairs laughing. Ellie has opened her shirt as a child on purpose to display the garish chest scar. Only, though, in places where she hoped to get something free—ice cream parlors, candy stores.

We’ve gotten our Make-A-Wish, sure—a trip to New York City to meet Stephen Colbert and hang out at The Colbert Report. But we also got a box of stuff from the developers of City of Heroes (including Recluse’s cape yanked right off a statue at the NCSoft Austin office), and a visit to Bioware Austin just after the launch of Star Wars: The Old Republic.

I also would, like Maya, suggest things I would prefer – sure, Stephen Colbert is cool, but wouldn’t you prefer a swimming pool? A trip to Hawaii, maybe? What about the Bahamas? How about a safari in Africa?

But nope, in the end, my kid picked a trip to the place I grew up, and the same city I went to college in.

At least I was able to impress her with my handling of the subways like a pro.

Then it hit even closer to home.

There were other moments, too, in the show that resonated—the overweening sympathy from people that makes you feel like you want to run in the other direction. The fact that you have to turn into an insurance expert, a medical expert, and a master negotiator. The fact that there’s never any money no matter how much you make because the medical bills take all of it.

I don’t remember which episode we watched together, but JJ was feeling guilty basically for being JJ. For having cerebral palsy, for the impact on his family. As we watched, my laughter faded a bit—my child was focusing on the show intently.

And not laughing.

At the end, I turned to her.

“Did you ever feel like that?”
There was a long pause, and she didn’t look away from the television. “Sometimes, maybe.”
Do you ever feel like that?”
“I know that we didn’t have money because of me,” she said quietly, still not looking at me. “I know that a lot of the problems we had were because of me. And my medical bills. And we can’t do a lot because of me. I feel like you’d have had a better life if you didn’t have me. You could have done all the things you wanted to do that you couldn’t do because of me. Instead of just taking care of me. You would have had a lot more money. You could have gone places. I feel bad about it sometimes. That maybe I ruined your whole life.”

I thought I had done an incredible job making her feel loved, and wanted, and as normal as she could be. As we sacrificed, and we worked hard to take care of her I thought it would be clear how much she was valued. I thought never leaving the hospital and sleeping on chairs for days at a time would make it clear that I would always be there. I thought that running to therapists and doctors and proms and friend’s homes and all these things would show her that I loved her, that I would do anything to help her, that she was cherished and loved and that we would do anything to support her.

Deep inside, though, down where it wasn’t okay to verbalize, my child wondered whether she had ruined my life because I did all those things.

But because JJ felt it, it was okay for her to feel, too.

And to talk about for the first time.

We spoke for an hour. And I noticed a change in her after we spoke. That moment represented a shift, an improvement—as if something that had been haunting her was laid aside. A silly sitcom helped me be a better mother and opened my child up to admitting her deepest, darkest, most devastating fear so we could talk about it.

On this Mother’s Day, I want to thank everyone that was involved with the show Speechless for facilitating that moment—I can never really describe the impact you had on our family.

I am sad there will be no more of these moments from Speechless, but I am so very grateful the show came on at all.

If you haven’t watched it, it’s on Hulu, and I encourage you to binge it.

Samson on Hill