Diagnosis Day: Shattered expectations

I always enjoyed the first class of the term. I would sit there — be it in a class of 15 or 200 — and look at the teacher with a clean slate. This teacher didn’t yet know me from any of the other students in the class. This teacher couldn’t yet tell that I would be one of his or her best students.

It’s arrogant to say that, I know, but that doesn’t make it untrue. I graduated from college with higher than a 4.0 GPA, receiving an “A” and often an "A+" in every single lettered class I took, from Physics of Energy to Economics to Russian to Photojournalism.

An “A” means “exceeds expectations.” That’s what I do. I exceed expectations in just about any project I set my mind to.

So when it came to the biggest project of my life — having children — I went at it with the same gusto I applied to other projects. I read books upon books, I researched, I analyzed it from all angles, I imposed diet and exercise regimens, I avoided potential toxins, I did everything right. Everything.

After the devastating news that our twins would likely be very premature, I began to apply myself to that scenario. I don’t think it would be too much of a stretch to say I devoted myself every day to keeping them from being premature. I quit work, I did everything books and doctors told me, I stayed hypervigilant to signs in my body that might indicate early labor. When I felt those signs, I went to the hospital and lived there (under awful conditions) for two weeks.

When I finally gave birth and everything was supposed to be fine but wasn’t fine, I then devoted the next eight months to learning about cerebral palsy and researching and implementing therapies, ranging from physical therapy to CranioSacral Therapy to homeopathy. My baby was given a vague prognosis of mild-to-moderate cerebral palsy and goddamnit, it was going to be mild. Because that’s what I do. If there is a range of outcomes, I work my ass off to get the best one.

So when diagnosis day came last Wednesday, and the doctor said “medium,” which I translated to “moderate,” I was devastated. It didn’t help that his attitude was that there was nothing to be done about it — either Malachi will end up having moderate CP or he won’t and the team of therapists will start working to help him adapt once he gets older and we know what we’re dealing with.

So, I said: “It just seems like you’re waiting for his brain to fail to make connections before you do anything about it.”

He sort of laughed and said: “What do you want to do about it?”

I should have looked directly into his grey eyes and said:

“Everything. I want you do to everything about it.

“I want you.

“To fucking.

“Fix it.”

You should know, by the way, that this man is supposedly the top cerebral palsy expert at a nationally renown children’s hospital. You should also know that he, like the developmental pediatrician we had before him, didn’t say anything that wasn’t a direct and limited response to a question from us. He didn’t even say it was cerebral palsy until we asked why we didn’t have a diagnosis yet. Even then he just said: “You have one.”

There was no sitting down and explaining the results of his evaluation, no tailored plan of action, no offers to call him if we had any more questions. At one point, in response to one of our fumbled questions, he said something like: “A lot of what I’m seeing here is extrapyramidal.”

I searched my recall for that term. “That… I think, if I remember from my reading, that means… involuntary movement?”

“That’s right,” he said, surprised, but didn’t elaborate.

When I got home and looked up the term, I found there were three different kinds of involuntary movement — he didn’t say which he saw — and that half of cases also have pyramidal or spastic CP and that this was a rare type of cerebral palsy, affecting about 10 percent of patients.

This threw me. We finally had an explanation for why Malachi didn’t display some of the more typical signs of CP (like tight, curled hands) and it wasn’t — as I had hoped — because he was doing better than other children. This meant all of the work and research we had done under the assumption that it was spastic CP would need to be reevaluated. A whole new chasm yawned before us.

After pressing from me to classify how many of Malachi’s limbs were affected — whether he was diplegic (usually affecting the legs) or hemiplegic (affecting one side of the body) — the doctor said he was “quad.” As in, quadriplegia. As in, affecting all four limbs. As in, my son is a quadriplegic.

I took a deep breath and said: “That’s what we thought, but when we look that up it seems so much more severe than what he has.”

“Well, you have to be careful there, because they’re talking about spastic quadriplegia and that’s a whole different kettle of fish.”

A whole different kettle of fish.

Was he taking this seriously at all?

I went home alone with my two babies, my head spinning. My mind was filled with images of “crazy” people — “retards” — who flailed their arms, slurred their speech and childishly demanded things. Oh God, is that going to be him? 

It didn’t help that last week my husband told me a statistic that 52 percent of children with CP are mentally retarded. Fifty-two percent. And that doesn’t count your run-of-the-mill learning disabilities.

For some reason, I never seriously considered this possibility. To me, the worst-case scenario was that he would be in a wheelchair, and I had come to accept that. But the idea that he wouldn’t be The Smartest Kid With CP Ever had never really occurred to me.

I think it was because when the doctors first discovered the brain damage, they were always quick to say that many people with CP become doctors and lawyers. In a sea of things they wouldn’t or couldn’t tell me, I had lashed my boat to their seeming confidence that Malachi would be OK mentally.

Now, my expectations were shattered once again. Malachi’s passivity in the face of toys evaluators swung above his head or Jaden’s sudden interest in the cat, which Malachi doesn’t share, were now certain signs that he wasn’t all there. (The CP expert said he would peg Malachi at about a two-month cognitive delay, though he said it was hard to tell if that was because of his motor control issues.)

Hot tears streaming down my face, I looked down at my baby, flailing awkwardly on the floor of the nursery next to his brother who was flailing slightly less awkwardly. They had no idea that I was sad. Their worlds hadn’t changed even the slightest bit since some dude had said the words "medium," "quad," and "extrapyramidal."

I looked at Malachi in his beautiful big blue eyes and he smiled. So I said, in my best impression of Happy Days' The Fonze: “A!”

Judging by his reaction, this was, bar none, hands down, the funniest thing he had ever heard.

I stuck my thumbs out and did it again: “A!” More throaty, high-pitched baby laughter. “A! A!” I said several more times to my captivated audience.

I was laughing and sobbing and laughing. They were just laughing. I dried my eyes with a cloth diaper and put them down for a nap. I cried a few more times over the next few days, but I know now that, come what may, there will be laughter. There may not be two walking babies, there may not be trips to the grocery store without rude stares and there may not be two college educations, but at least there will be laughter and that’s OK with me.

I suppose, after a year of practice at failing to exceed expectations, I’m getting better at it.