Musings of a Marfan Mom

It’s been difficult recently. The Menininho’s tantrums seem never-ending, and sometimes come out of nowhere. He even smacked Mark in the face the other night, which he never does. It’s come to the point I try to avoid taking him anywhere by myself if I don’t have to, which means Mark runs most of the errands after he gets home from work.

The other day I made it to M’s school a little early for pick-up. One of the other mothers approached me and asked how I was: really asked, you know? So at first I gave the standard answer “I’m ok, just a little tired,” but she probed a bit more and I started explaining that M’s behavioral issues have really been wearing me down. I question whether the behavior strategies I’m using are the right ones, or whether I’m somehow “rewarding bratty behavior” as someone last night on one of the forums Mark frequents accused him of doing. And of course this mom understood. She talked about what it’s like to be that family in the store, where people glare at you or even comment about the noise your kid is making. I hate the comments I get that brush it off, like “Oh, all kids at that age throw tantrums; it’s no big deal,” or “I bet your kid doesn’t even have autism” just as much as the glares when M is “having a behavior.” But, while it was somewhat cathartic to be able to vent to someone who truly does understand, it was also a bit depressing facing the reality that this is going to be a long road for our family.

That night I stayed up talking with Mark. “I feel like a terrible mother,” I complained. “I should be the kind of mom who has the pass to the children’s museum and takes her kids there weekly and to playgroup and library time and music classes. I want to be able to do that!”

And then I stopped.

It’s not really about being the kind of mom that I want to be. The purpose of being a mom is to be the kind of mom that my kids need me to be. Right now, M doesn’t need a mom who shuttles him around to lots of different activities; he needs a mom who plays his favorite music, encourages him to use his words, writes out the ABCs for him to label over and over, and helps him navigate a world he doesn’t always understand.

You know what? I felt a whole lot better after I realized that. I needed to give myself permission to parent. I’d still like to remove these challenges from M, and I’m still going to have days I wish I was the mom I’d envisioned before I had kids, but on those hard days I’m going to make a concerted effort to consider the positives. And who knows? Maybe a pass to the children’s museum will be a good goal for us to work towards!

How do you give yourself permission to parent?