Letters to my Children, Part 2

Dear Julianna,

As I sit here in the dewy twilight of predawn, I don’t even know where to start. You are sweet and sassy and a pain in the you-know-what, and I have no idea what our life would look like if you were not part of it. The memories of your first days with us are indelibly stamped on my sense of self. When I pick you up, I can’t help but marvel at how small you remain—how soft and snuggly you can still be when you want to, and yet how long and lean and little girl you have become. I have to shake my head whenever your daddy fusses about you being chubby. You are definitely not chubby.

Reach for the sky, angel girl
Reach for the sky, angel girl

Every stage of your life takes longer than with your brothers. Right now you’re in the awkward stage where you understand more than you can communicate, but you don’t understand everything. I can see your frustration when you want to tell us something, but you don’t know how. Or when you’re trying to tell us something and we don’t get it. Luckily, despite your fire and sass, you are a good-natured little girl, so you take things pretty well in stride. Still, I wish I could hurry you through it. Of course, I’ve never been able to hurry you through anything, but then, I wonder if I’m persistent enough. If I tried harder, would you learn faster? But I suppose if I could hurry you through this stage, we’d just reach the next slow awkward stage that much sooner.

There are lots of stereotypes about kids with Down syndrome. Good-natured is one of them. So are sweetness, sassiness, stubbornness, and a love of music. So in that respect, I suppose you are a perfect paragon of your chromosomes. But I’m finding those stereotypes annoying these days, perhaps because we’ve heard them so often. In many people’s eyes, DS defines who you are. There’s a certain logic to that—DS is, after all, built into your genetic code—but on the other hand, so are tall versus short, bad eyes versus good eyes, brown skin versus “white” skin. Hmmm. There’s another whole blog post in that sentence.

In any case, I’m thinking about this a lot lately because of the musical stereotype. Now, genetics dictate that you are destined (or cursed) to be musical, regardless of the extra chromosome, simply based on who your parents are. And you are displaying it vividly already. It’s hilarious to watch you sit in front of Alex’s CD player and howl whenever a song ends, and smack the boombox, trying to get it to start playing again. Singing is the only way to keep you from shrieking throughout tooth brushing and hair combing. This makes me happy.

But as I learn more about the local education system, I know some fear, too. Appreciation of music is a blessing, but for one gifted as our family has been, it’s not enough. Making music is where the joy lies. When you get to middle school, will they let you play? Will they let you sing? Or will they be unwilling to take on a slow learner? Because let’s face it; your other birthright, the one with a medical name, makes it unlikely that you will ever have diction that will satisfy a choral director. It makes it highly likely that learning to move fingers on an instrument will be a skill acquired slowly, and always at great cost. At least, this is my fear. In a school district where 78% of kids with mental retardation are in with their typically-developing peers less than 40% of the day, I don’t have great faith that you will be welcome in band. And what burden, then, does that place on us, as parents who want your life to be as rich as your brothers’?

There are other things to worry about as the school years approach. Your daddy has been fretting from day one about teasing. I’ve always taken a more relaxed view of things, but just this morning I remembered something that happened to me on a field trip in the sixth grade. We stopped for lunch at McDonald’s, and I ordered a happy meal. One of my classmates, seeing my little cardboard box with the golden arch handles, said condescendingly, “So, are you happy now that you have a happy meal?” My tender soul absolutely shriveled under that mockery.

Twenty years later I can see how ridiculous it is for a middle schooler to be ordering a meal meant for preschoolers. But bear in mind, I grew up in a family that did not go out to eat. I mean that quite literally: once when we were arriving home from vacation at 6:15p.m., my parents chose to go home and cook rather than eat out. (I remember this because I was really hungry, and I was not happy about having to wait another hour and a half to eat.) So for a kid who never ate out, the McDonald’s menu was completely overwhelming. At least I knew what was in a Happy Meal.

The rest of my classmates didn’t know that, but would it have mattered? Probably not. Kids are capable of appalling cruelty. And as much as I want you, my angel girl, to be a bridge builder, through whom your typical peers can learn kindness and acceptance, my heart quails at the thought of you having to endure such cruelty.

But if you were your brothers, I would say that learning to deal with such things is part of life. Is it because you’re a girl, that I want to protect you? I hope not. Is it because you have Down’s? Maybe. Maybe it’s an instinct that tells me that you are more in need of protection than your brothers.

Then again, you’ve never had one moment’s hesitation in getting in people’s faces and standing up for yourself. So maybe I just need to get over it.