“Growth disorder.” It was one item on a checklist of ailments that I was filling out at the dermatologist’s office, where I’d taken Liam so the doctor could inspect a mole on Liam’s back.
“Growth disorder,” on a list with asthma, leukemia, shingles, bleeding tendency (what on earth is that, I wonder? Don’t we all have a tendency to bleed?)…a list of problems long enough to fill the entire sheet of paper.
It’s the “disorder” that gets me, although I suppose, technically, that’s the correct term for why Liam is so short. Conventional medical wisdom dictates that preemies “catch up” in growth by their second or third year, but true to form, Liam flew in the face of convention. He stayed small, stayed off the growth chart, that ubiquitous measurement of “normal.” He stayed small to the tune of being always the smallest kid in his grade, so small that people ask him if he and Caleb (who is almost four years younger) are twins.
We’d debated for almost a year about whether or not to give Liam growth hormone. How do you say to your kid that you love him just the way he is, in all his ferocious tiny glory and then say, “but here’s a shot so that you can get bigger and look different?” My friend Patsy made the analogy to giving a kid braces: no one is going to die from bad teeth, but why not give your kid the advantage of a nice smile? Our endocrinologist said that Liam’s size wouldn’t be an issue…if we lived in Costa Rica. I wasn’t sure exactly what I was supposed to do with that information—plan to send Liam to college in Costa Rica so he can get a date?
In this country, unless you’re the short Clinton cabinet guy, being a man who barely scrapes five feet can be tough. And Liam has shown no interest in horses (or labor policy) so I’m thinking that jockey is no more an option than being Secretary of Labor.
For most of last year, Liam said no way was he going to get shots, and then I think he got sick of the “are you twins” question and, even more importantly, he got sick of getting muscled around on the soccer field by kids who weren’t as good as he was but were just…bigger.
One day, out of the blue, as we walked home from school, he said “let’s try those shots,” and voila, we were sucked into the maw of big pharma: blood tests, and forms, and more forms, and still more forms. Pfizer makes the form of the drug that Liam takes and without insurance a year’s supply of the drug would set us back tens of thousands of dollars. But boy oh boy, look what happens when you’re an insured patient taking a big-bucks drug: we have “patient care consultants” who know Liam’s case by name (or pretend to); we have someone to supervise the visiting nurse who came to teach us how to give the shot; we have an international contact; a pharmacy contact. It’s an entire network dedicated to us special HGH folks.
Sometimes when I’m on the phone with “our” rep, I fantasize that everyone has access to this quality of care, but then I remember what country I live in and that fantasy pops like a soap-bubble.
Six days a week, Liam gets a shot. A needle in the butt, or thigh, or stomach. Eventually he will probably give himself his own shot, but right now, we do it. And even though we’ve been doing it for seven months, I still can’t get used to it—the initial split-second of resistance as the needle pierces the skin; the little snick as I pull the needle out. Most nights (the shot has to be given before bed), Liam is stoic about it, but at least once a week he moans about the injustice of it all: Caleb doesn’t get a shot, Caleb isn’t small, and in fact Liam is the ONLY PERSON IN THE WORLD WHO HAS THIS AFFLICTION.
The thing is, unlike all the other times he insists that life isn’t fair, in this instance, he’s right. It’s not fair. It’s not fair that he’s so tiny; not fair that he got yanked from my tummy eight weeks early; not fair that his body never decided to catch itself up to where it should be; not fair that he gets a needle six days a week.
On the other hand, the problems we were warned about while he was in the NICU (many of which are listed on the sheet I got at the doctor’s office) haven’t happened. Smallness might be awkward, but it’s not fatal (although from the perspective of an athletic ten-year-old boy, it’s pretty damn close).
We warned Liam that the shots wouldn’t make him suddenly shoot up to the size of his friend T., the tallest boy in fifth grade, and he says he understands, but we knew he dreams that somehow, that would be precisely what will happen. What did happen? His feet grew—we’ve gotten him two new pairs of shoes since November. He’s got a bigger appetite: three pieces of pizza are now the norm, not one. But he’s still small enough to curl easily into my lap, even though when he does, there’s a heft to him that’s new; he no longer feels like a stiff breeze could whirl him away.
I tell him that a watched pot never boils and that growing is a slow process, but he doesn’t care. He asks me to measure him almost every week and scrutinizes each mark on the wall like a soothsayer studying druidic runes.
We don’t have the heart to tell him that for the shots to work, they probably have to continue through puberty. Otherwise the body slows down and any gain that’s been made will be lost. How many more years of needles will that be? Six? Five? Four?
Maybe in five years, the shots will have been replaced by a pill, or maybe he will be so used to it he won’t complain any more. Who knows.
What I do know, though, is that I left the line next to “growth disorder” blank. It’s not a disorder. He’s just short.