Since Nicholas arrived, Julianna’s developmental struggles…or more accurately, our struggles to get her to develop; she’s pretty happy to mosey along at her own pace… have abruptly taken a much smaller chunk of our attention. I didn’t realize how much our life, or psyche, revolved around the presence of a child with Down syndrome in our house. Nothing has changed structurally. We still have five hours of therapy every week, and all of life still has to conform to them. But it’s no longer foremost in our minds. And strange though it may seem, in a lot of ways Julianna is doing better than when her development was the center of the Basi solar system.
Three circumstances converged about two weeks after Nicholas was born. First, my mother-in-law came and spent the week watching the therapists work. Then she spent ten-minute blocks duplicating their efforts (something I have not done enough of).
Second, Gerti began taping Julianna’s legs. Kinesio tape has been used in several incarnations in this house—vertically on the back of her neck, to help her lift her head; in an X across her tummy, to help her engage her abs; and now, wrapped around the upper legs, beginning at the knee, to help her keep her legs close together for walking.
Third, I simply couldn’t carry her, post C-section. So when Christian and his mother went back to their normal lives, she began walking everywhere, all the time—holding on to my fingers, yes, but still walking everywhere.
And now, she can walk 20 steps at a time on her own (for Gerti…she won’t do it for me yet, but Gerti always gets results long before we do). The calluses on her knees have gone away now that she is upright as much as she is on all fours. But man, she’s speedy on all fours. Every time I hear her run on four limbs I have to laugh, it’s so funny.
But mobility is not the only change. Julianna’s getting positively plump. I thought at first that it was a change in my perspective, comparing her to an infant. But there’s no longer any mistaking it. She also has new glasses, which can be folded, twisted and bent. I hope all my readers can appreciate what a major plus that is. She adores her baby brother. He lights up her life. And she’s polishing her toddler attitude. Boy, is she ever. When she doesn’t like something, she sticks her entire upper half forward (leading with the chin) and yells, “AAAEEH!” (Short “a”.) Now, I can’t quite inflect that properly on the page. It’s a hybrid of a scream, a growl, and an earthquake in the larynx. Ah, the joy.
She loves music, and wants us to play it all the time. Musical toys get snuggled right against her ear, which occasionally makes me wonder about hearing, even though I know better. I’m starting to work on colors with her—really work them, I mean. We start by sorting, the therapists tell me. Her play and imitation skills are coming along—it’s the cutest thing, to see her try to comb her own hair. Brushing her teeth, though—ooh, that’s still ugly.
Such is a light skimming of the surface of Julianna’s life at two years and three months.
Kathleen M. Basi 