Discombobulated Hope

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In the last couple of years, my little boy has been growing up. I’ve noticed certain things, like the way he drops my hand when we are walking in the school parking lot, or the way he ducks his head and smiles in a sort of embarrassed way if I kiss the top of his head when we are out in public.

He has become much more independent, and no longer needs my help with showers or cutting the meat on his plate up into manageable bites or reading his homework questions to him aloud.

Yeah, my little boy is really growing up.

But my little boy is not growing.

Always on the smallish side, we’ve watched his height and weight closely over the years. When he was an infant, the lack of growth caused his doctors to suspect Cystic Fibrosis, but testing revealed that wasn’t the problem. Then, they were sure he wasn’t growing much because his asthma was out of control, and because of the steroids needed to treat the frequent asthma flares.
It seemed like there was always some new explanation.

Once his immunodeficiency was diagnosed, everyone threw their hands in the air and said, “Yes! This is the problem!” and I was assured once we started treatment for that, his growth would take off.

It didn’t.

Of course, then there was the fundoplication to stop the reflux, and while that helped the reflux and vomiting episodes, it didn’t seem to help the little issue with vertical advancement.

So we met with an endocrinologist when he was about 6 years old, who suggested he was young yet and had plenty of time for that growth spurt to kick in, and we should just watch and wait.

And we met with a nutritionist, who suggested we add vegetable oil and butter to all his foods and feed him a high calorie snack every night and we even went so far as to purchase a weight-gaining powder for kids who have Cystic Fibrosis (even though he doesn’t have it) just to see if it would help him gain weight.

It didn’t.

So time has gone by, and he grows, here and there, just a little bit. And there are times when we are thrilled that he has gained a ¼ of an inch and a half-a-pound and we start to think, “Here it comes, he’s going to really take off now!”
And then I see him playing around with kids in his grade, kids at baseball or soccer practice, and it strikes me again how really small he is. And here’s the kicker: I held him out of school a year, so he is actually a year older than the kids in his class. He is smaller than every one of them.

We don’t make a big deal out of it around here, and truthfully, I see him everyday and he just looks like himself and I forget that he hasn’t grown in awhile. But this spring, as soccer season was gearing up, I got out the box of cleats that had been stored over the winter and when I got his out and he tried them on to make sure they still fit, it struck me that he’d been wearing those same black cleats with the shiny metallic gold stripe down the side for over three years.

Three years.

He hasn’t changed a shoe size in over 3 years. That just doesn’t seem right.

I can tell it’s starting to bother him. Every year, the night before school starts, he tells me he had a dream that he went to school on the first day and he was taller than all of his classmates, and it was so AWESOME.

And I see the look on his face when people squat down on their knees to get to his eye level and talk in an overly cheerful, high pitched voice as if he is a really young kid, and he looks back at them with the most disgusted expression, like the way your face looks when you get that watery jowls feeling just before you realize you’re about to vomit.

Then he will say, in a very loud, clear voice, “I am eleven-and-a-HALF, and I am in the FIFTH GRADE.” You know. Just so they know they don’t need to use that baby voice with him.

He won’t wear shorts to school because he has been teased about having “chicken legs”.

When we went to buy new clothes for school this fall, he insisted on buying a size larger. He tried them on and came out of the fitting room and even though we had to cinch up the waist adjuster straps on the inside as far as they would go, and the hem of the jeans puddled a little bit onto the floor when he walked, we bought the larger size.

Because he really wanted them, because he really wanted to be able to say he had grown, and because truthfully, I am just seriously tired of buying my son the same size clothes every year.

He is two years younger than his brother, who is five-foot-five, and who is expected to grow past six feet tall, and he will suddenly say at the most random times, “He eats and eats and grows and grows, and I eat and eat and stay the same. Why?”

And I don’t know what to say.

I tell him he is perfect. I tell him he is exactly who he is supposed to be. I tell him he can’t compare himself to his brother, because they are completely different people. I tell him people come in all shapes and sizes.

He doesn’t buy it. He’s been talking quite a lot lately about “…when I hit my growth spurt,” and all the plans he has for that magical day when he wakes up and is suddenly tall.

And I listen to his ramblings and smile and nod and all the while the feelings in my mother-heart are hurting quite a bit.

So at this year’s well-child visit with our family physician, I brought it up. Again. And she opened up her little computer and checked out his growth chart and showed it to me, and instead of a mountain or even a curve, his line goes in a pretty much straight, flat line across the graph.
She sent us off to a different endocrinologist, who agreed that something doesn’t quite seem right, and he checked his thyroid (again) and sent us for a bone age scan (again) and now here we sit, at a hospital that is not the one we are used to but is the one the endocrinologist is affiliated with, for a Human Growth Hormone stimulation test, to see if my child is lacking the hormone that should be making him grow.

I hardly know what to hope for.

I certainly don’t want to add another diagnosis to the long, long list of diagnoses my son already has. I really don’t want to add anymore medications to the long, long list of medications he already takes every day.

Truthfully, I don’t want – if this test shows he is deficient – to pierce the skin of my child every day for the next three years, to force the lacking hormone back into him, all in an effort to make him grow.

It’s something I’ve always said I wouldn’t do….pierce the skin of my child. I CAN do it, I’m even certified to do it, but I have never wanted to be their nurse. I want to be the one with Band-aids and kisses and dollars for the vending machine when the needle is done.

I don’t want to be the one that inflicts the pain.

Then again…..

How can I deny him the chance, if indeed there is one? If it turns out he is deficient and the injections will help, how can I not do it? Especially when he is willing, even excited, to do this.

Back and forth, back and forth goes my brain.

And I have friends who have had nothing but wonderful experiences with HGH injections.

And I have friends who have had nothing but horrendous experiences with HGH injections.

I suppose in the meantime, I will just sit here in this tiny, cold room with my son who wore his most comfy pajamas for the occasion and watch him looking small in the big, white hospital bed, and watch the nurse coming in and out, and watch the medicine as it goes into him and wonder what the outcome of this all will be.

I suppose there is nothing at all for me to do besides just wait.

Again.

And still.

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6 responses to “Discombobulated Hope

  1. Your story was very touching and wonderfully written. I wish you and your family the best if luck. I hope results are good and doable. Perhaps to shed a small smile to this topic you can bring up fact Al Pacino and Tom Cruise are not very tall men but amazing actors and very creative people so chin up ! Xo 🙂

  2. I never like clicking ‘like’ on stories like this one, because it always seems that I’m ‘liking’ the hardships others are going through. Still though, this was a moving piece, and my thoughts and prayers are with you and your son during this time. Hopefully the results are more conclusive than before, and the solution is a doable sort of treatment that will actually help. I don’t have children, but I’ve been caring for my elderly grandmother for a while and nothing frustrates me more than a ‘we don’t know, we need more tests.” Hang in there.

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