45 minutes ago
Sunday, November 7, 2010
Saturday night's all right
It's Saturday night, and Max and I are about to have dinner. If Dave is around, Max will want him to feed him. Mushball Dave will do anything; Mommy is tough love. But Dave's having a boys' night out and Sabrina is at a playdate down the block, so it's just me and Max.
"What do you want for dinner?" I ask, and throw open the fridge. Max scans it carefully. He points to meatloaf in a casserole dish. Then he swings around and points to some sweet potatoes in a wicker basket on the counter. No surprise, it's his favorite meal.
I heat the food up, singing "Max looooves sweet potatoes, but they're not puuuurple!" and he giggles. He is still obsessed with purple, in concept, though he only wants to wear brown clothes.
I mash up the food. It's a tricky balance; we are supposed to give Max chunkier food to encourage chewing, still a major challenge, but I worry about choking. Besides, it's Saturday night, I'm going to mash up the food and relax.
I place the heated-up meatloaf and potatoes in his favorite purple bowl, one made of indeterminate plastic material, the kind you read about in those environmental reports that make their way around online. We got it at Disney's Animal Kingdom Lodge when we were there in May. A staffer had a stack of plates set out for a play activity; Max made off with the purple one, and I'm pretty sure there is still an APB out for his arrest in Orlando. I have fantasies about setting that thing on fire, which could get rid of it but the fumes might be deadly.
While Max is not looking, I mix several tablespoons of butter into his sweet potatoes. Max is a skinny kid, and we try to get in calories however we can. When you have cerebral palsy, your muscles work overtime and that burns more calories. Sometimes moms look at Max and make comments like, "Why is it that boys always get the skinny genes!" and I don't bother to explain the cp, or that they've just given me a complex.
I seat Max in his chair, a Keekaroo that's held up really well, and bring over his meal and his special spoon. It's one of those ubiquitous maroon spoons for kids with eating challenges; his occupational therapist at school added molding around the handle to help Max better grasp it.
Max points to the food and then to me. "No, Max, you have to eat by yourself," he says.
"Nooooooo," Max says. He has the most clear "Noooooooo." Of course. Hey, I'll take it.
Distraction usually works, so I ask if he wants chocolate milk, and he nods. I mix some up in a plastic purple cup we got from an amusement park, yet another piece in our collection of eco-hazard eatingware. The cup doesn't have handles, so I grab some paper towels, tip the cup into his mouth and hold them under Max's chin (helpful for spills and jaw support, to control his drinking). Dave and I joke about buying stock in a paper towel company, we go through many. Dish towels, too.
Max starts spoon feeding himself, looking at me for approval. "YEAH, MAX!" I say. He points to the salad in front of me, and then to me. "Yep, salad for me, meatloaf for you," I acknowledge.
Suddenly, he's staring suspiciously at a spoonful of sweet potato. There is a telltale glob of butter. "Noooooo," he says. "It's OK, Max. It's part of the sweet potato!" Yes, I regularly make up food fibs to get Max to eat things: "Max, there is no banana in your oatmeal! Oooh, Max, this yogurt tastes just like chocolate ice-cream!" There is a place in hell for mothers like me, or heaven, depending on how you look at it.
I make conversation with Max, simple questions: "OK, Max, what is your favorite food? What's your favorite color? Do you want Caleb to come over for a playdate or do you want to go to his house? What toys do you want for your birthday?" We also eat in silence for a bit. We've got some nice atmospheric lighting; there's been a copper pumpkin candle holder sitting on our table for weeks, and Max asked me to light it.
He makes it halfway through his meal before Sabrina gets dropped off from her playdate and distracts him. A little while later, I give in and let the two of them watch SpongeBob SquarePants (I am not completely mushball-free). Sabrina wants string cheese; so does Max. I can't give it to him to hold, because he could bite off a big chunk and choke, but it's easy to rip pieces and feed it to him. I try to place pieces on his back molars, so he can more easily chew it. Sometimes, he bites my finger, job hazard. Can I get worker's comp for this?
Then it's bath time. Max asks for a cup, and I give him a clean one. I love letting him practice drinking in the tub—read, no mess to mop up. He chugs throughout his bath as I wash and shampoo him (Johnson & Johnson lavender stuff in a purple bottle, of course). Then I lift him out, wrap him in a towel and sit with him for a few minutes, cradling him. He leans into my neck and takes a deep breath. We both love this moment.
"MOMMMMMMMY! I DON'T WANT A BATH!"
It's Sabrina, at her most charming. I give her a free pass as I change Max into his night diaper and pj's. "Time to brush your teeth," I say. This is always a crapshoot; sometimes he fights it, sometimes he gives in. Tonight, he's OK with it—and he wants to do it himself. Woo hoo! He parks himself in front of the big bathroom mirror and has at it with his purple toothbrush. He doesn't do a half-bad job. "EXCELLENT, MAX!!!" I say, and he grins.
"LOOK AT ME MOMMMMMMY!"
"Sweetie, you do a great job, too," I tell Sabrina. I get overly enthusiastic about everyday stuff Max does, things that Sabrina can so easily do, but she still wants that attention, and she deserves it. My bad.
Then it's reading time. Both Max's and Sabrina's schools have reading challenges right now. Max has to read 10 books in the next couple of weeks; Sabrina has to get through 200 minutes of reading in a month. Not very hard. We have a stack of library books; Max's are about airplanes, trucks and race cars, and Sabrina's are all from the Berenstain Bears series (can I just say, those bears are such dorks). I read to Max, paraphrasing and trying to make the text understandable for him. I ask him questions about what's going on in the book, like his reading teacher recently suggested.
"I'M BOOOOR-ED," Sabrina says. She's sprawled out on Max's bed, looking at one of his books.
"Honey, I'm going to read to you next, let me just finish," I say.
Then I put on his two turtle night lights that project stars onto the ceiling; Max has snagged Sabrina's but, atypically, she hasn't minded. "Eeear ooooh!" Max says ("They're blue!") He always wants to make me aware that they are blue, and not purple. "You're right, they're blue," I say. And then I plop him into bed, positioning his head on the pillow so it's comfortable. I learn over and he gives me a big, slurpy kiss.
I read Sabrina several books, and tuck her in. The big-girl bed we ordered for her is coming Thursday, which is tragic for me because I've been using it as a threat. ("Stop that behavior this instant or I'm canceling your big-girl bed!")
Then I head downstairs to relax. But I'm already feeling good. It was a really nice Satuday night, the kind that wouldn't have been possible when Sabrina was a baby. Back then, I was scared for Dave to leave me alone with the kids. Yes, scared. Max needed everything, and I wasn't sure I could handle him and Sabrina. What if they both lost it at the same time? What if Max had a seizure? The trauma we'd been through after Max's birth had destroyed my parenting confidence; it took years for me to build it up.
These days, though, I'm happy having them all to myself on the weekend. Max is a lot more independent, and I know what I'm doing (more or less). I can just enjoy my kids, both of them. Together.
And that's a great Saturday night.
Posted by Ellen Seidman at 12:10 AM