On getting sucked into special needs parent self-pity

It was the kabobs that started it. A lovely article in Real Simple magazine with 10 variations—a plum and oregano chicken kabob, a miso-glazed mushroom kabob, a halibut, potato and scallion kabob. As I practically drooled onto the page, it occurred to me that Max would have a hard time eating them. Dave or I would have to slide the pieces off the skewers and cut each up into bits, or feed him something else entirely.

Suddenly, I wasn't looking at some delicious dinner possibilities, I was looking at a bunch of choking hazards. I sighed.

Last night, sitting on my couch at 9:55 p.m., I got sucked into self-pity. Why can't we just be a family who enjoys a barbecue with kabobs? I thought. Meanwhile, I'd opened my email to find a message from a coordinator at a program Max is going to this summer. Along with the forms, she needed me to provide a prescription for Diastat (in case of seizures) and the Auvi-Q (in case of allergic reaction). Aaargh! More stuff to do! I thought. And then: Why does everything have to be so hard? I wish my life was easier.

It's not often that I wallow. Every day, I handle plenty of stuff for Max's benefit—Sabrina's, too—and I don't think twice about it. That's what we moms do: We do. Every once in a while, though, I get the woe-is-me blues about the extra responsibilities and challenges that come with having a child who has special needs.

The pity struck a lot more often when Max was a baby, when I was overwhelmed with all the therapy to-dos and full of anxiety about his future. I just wanted to be one of those moms serenely wheeling her babbling tot down the street or watching him play on the teeter-totter at the playground, and it pained me that I wasn't. Crying in the shower was as much of a daily habit as shampooing my hair.

As Max progressed and I matured as a parent, the tears receded. I rarely cry anymore about what happened to him. I look at Max and see an amazing kid, not a tragedy. I've learned not to peer too hard into the future for answers nobody has. But I still have bouts of pity—for me, for Dave, for our family. Even though I can't stand it when others pity me (or Max), I let myself go there.

Restaurants have long been a trigger; when Max has a sensory freakout, I ache to be one of those families happily chowing down. I pity us when Dave and I struggle to wrap our work life around a medical appointment or a string of them, as happened recently with serial casting for Max's feet. I feel a twinge of regret every single time I hear about a family going on a hiking trip or some other physical adventure Max isn't yet capable of tackling. And when I go over expenses with Dave, wow, do I pity us.

Sometimes, as happened on the couch, the pity onset is unpredictable. There is no known antidote, not even Turkey Hill Peanut Butter Pie Frozen Yogurt. If Dave is around I'll talk it through with him and that helps. But more likely than not, I'll sit there and wallow for a while. And that's OK.

Last night, I stared into space, mulling over kabobs and taking care of Max.

And then I turned the page.