Every day at naptime, we go up to Alex’s room to read books. He picks out a few books (almost always about trains or tractors). Then he climbs up on the bed, and I settle down beside him with Julianna on my lap.
We usually make it to page two before Julianna decides that trains and tractors are not nearly as much fun as her brother. She launches herself off my lap and onto Alex, who dissolves into giggles. This, in turn, makes Julianna laugh— “U-heh…u-heh,” and before long, story time has deteriorated into a wrestling match between two very unevenly-matched contestants.
You might think that Alex would win every time, hands down. But Alex, like his mother, is afflicted with jelly legs when he gets to laughing. So Julianna almost always comes out on top. Also in her favor are her low muscle tone, loose joints, and high pain tolerance (courtesy of an extra 21st chromosome), which allow her to sustain a lot of rough treatment without fuss.
Julianna thinks her big brother is the funniest thing in the world. And Alex sees Julianna as his best toy. They absolutely adore each other. But I wonder if he’ll find her somewhat less amusing when she gets mobile and can chase after him—and his toys.
In the last few months, we’ve started talking with him about having another child. At first he didn’t get it. He’d wail, “No! I want Juweenanna!” We finally figured out that he thought we wanted to take Julianna away and get a new baby instead. Now that we’ve straightened that out, he just tells us he wants two Juweenanna’s. We keep trying to explain that it would be confusing to have two Julianna’s, so we might name the new baby something different. But it doesn’t seem to make much of an impression.
Meanwhile, Julianna is getting feistier by the day. She can’t sign, she can’t talk, but she makes her desires eminently clear. Case in point: This morning, Alex had peanut butter for breakfast, while I was feeding Julianna yogurt. Now, peanut butter is quite possibly Julianna’s favorite food (except for the obvious, ice cream, which she folds herself in half to bury her face in). So this morning, rather than screech, she simply ignored me and the spoon in my hand, and instead stared fixedly at Alex’s plate. For two minutes solid. Finally I gave in and borrowed his plate. “Is this what you want?” I said, and her face broke into that goofy grin, and her legs started kicking.
She knows bedtime, too. She starts howling as soon as you carry her into her room. Some days we’re treated to half an hour of outrage, even though three minutes earlier she couldn’t keep her eyes open in her high chair.
When you’re parenting a developmentally disabled child, you know that they’re going to learn it all eventually, but you don’t really know it. You live day to day, focused not so much on when things are “supposed” to happen, but on what incremental development does occur. And then, at 15 or 16 months, when a child begins to show that she understands language and her world, there’s a rush of pride that is magnified by the event being so long anticipated—or perhaps more accurately, being so long delayed that you forgot to anticipate it.
These moments in the woods, where I pen this blog entry for later posting, are a wonderful respite from the chaos and noise of child rearing. How I, who prefer peace and quiet most of the day, ended up with two of the loudest children on the planet is a mystery. God must be sitting up in Heaven chuckling at me.
Kathleen M. Basi 