Posted by: Hallie Levine | December 23, 2011

Iceland

This past Wednesday, I took Geoffrey to see yet another pediatric eye specialist.

To be honest, I thought it was overkill. Geoffrey is doing amazingly well. The other eye specialists who have seen him are optimistic that his vision will ultimately be at least 20/100 and quite possibly even as good as 20/60. This past Monday, the state vision therapist came for his consult and raved about his progress. At seven months, Geoffrey has met all of his vision-related six month milestones and is busily working on reaching his nine month ones. While initially we saw some fine motor delays, as his vision is getting better he’s rapidly catching up. Our vision therapist and occupational therapist warned us we might see some delays in crawling, but Monday night he shocked me by getting onto all fours and rocking back and forth. He grinned at me, obviously so proud of himself, and as he gingerly hopped forward a few steps, a tentative baby bunny hop, I watched as his tiny little tush swayed back and forth and thought, “you go, my darling. You show them all.”

I debated cancelling the appointment but then decided I might as well go. The doctor we were supposed to see is a highly regarded eye surgeon at NYU. I figured he would say pretty much the exact same things as the other two specialists, and then I really could set my mind at ease.

It turns out I was wrong. Dead wrong.

We arrived at the office, a swanky high tech environment off of Central Park West, early Wednesday morning. Geoffrey was furious that I was keeping him from his nap, but he surrounded grudgingly to an eye exam and the zillion katrillion pictures the office staff kept taking.

The doctor was exactly what I expected—salt and pepper hair, late 40s, suave and smooth talking without coming across as too slick. “I know you’re a medical journalist who has obviously done her research, so excuse me if you think I’m talking down to you,” he said as he turned on his projector.

An adorable photo of my son—blonde hair shimmering, blue eyes crinkling up as he smiled—flashed onto the screen.

“Ooh,” I said in my typical mommy cooing voice, then I paused, puzzled. Something was off. And then I realized. His head was tilted down and to the right.

“That’s your son’s null point,” the doctor said triumphantly as he gazed at the screen. “He’s a smart little guy and he’s clearly figured out that when he tilts his head to that exact angle, he’s best able to control his nystagmus, which means that’s where he gets his best vision.”

“I don’t know,” I said, confused. “I don’t think he does that normally.” I was frantically racking my brain. Was he doing that at home while I schlepped him around everywhere and I was just such a bad mother—and so wrapped up with my two other kids—I hadn’t noticed?

“It’s not all the time,” the doctor said. “But if you watch him carefully you’ll see that he does it. It’s very subtle at first, so you may not always notice. But as he gets older he’ll start doing it more frequently, which can cause head and neck strain. That’s why I recommend doing surgery early, before age two if possible.”

I stared at the photo as the doctor went into a detailed explanation of albinism. Everything he said I knew already, and I started to zone out, but he got my attention as soon as he said, “and your son’s vision will most likely be between 20/100 and 20/400.”

“What?” I said, coming back to the conversation in a snap. “The other specialists were very optimistic about his vision. They think it will be at least 20/100 or better.”

The doctor looked startled. “That’s way too optimistic in my opinion,” he said cautiously. “I’ve seen over 1000 kids with albinism in my practice. Your son has virtually no pigment in the back of his eye, which worsens the visual prognosis.”

“But, but,” I started to stammer. “He just seems to see so much.” I was thinking about last Monday, when he sat by himself flipping through pages of a book and babbling. The vision therapist was beside herself. Apparently it’s very difficult for any seven month old, much less a seven month old with a visual impairment, to be able to coordinate all those things simultaneously.

“Well, of course he can see,” the doctor said patiently. “He just has trouble making out fine detail. Your son will most likely end up being a very bright little boy whose only modifications in school will have to be sitting in the front row so he can see the blackboard. Even if his vision is 20/300, or 20/400, he’ll learn to compensate and will achieve a tremendous amount.”

I sighed. I was still having trouble digesting the information. “I guess we were hoping he might be able to drive,” I said lamely.

The doctor sighed and shook his head. “I just don’t see that,” he said. “I really don’t. I think he’s going to end up being a city kind of guy.”

He paused.

“If you decide to do the surgery, I’ll want to see him back around his first birthday,” he said, and then, “please call if you have any questions.”

I walked out of his office in a daze. The intellectual, rational part of me knew that even if what he was saying was true—and I wasn’t sure it was—Geoffrey’s visual impairments wouldn’t hold him back in any real way.

But the other part of me, the tired, emotional mommy part, couldn’t help but cry. Sure it had been scary those first few months when it seemed Geoffrey hadn’t been seeing anything, but as his vision had come in, and the other doctors had become so optimistic, I had begun to have hope again. Hope that my son would be one of those kids whose vision ends up being 20/40 or 20/60, not bad enough to truly impact his—and my—life. Sure he’d be a little sensitive to bright light and would have to sit a little closer to the front of the room, but his vision would be good enough not to warrant any more real interventions. That I wouldn’t have to face a world of therapies and IEPs and specialist consults again.

During the hour ride home from the city, Geoffrey slept and I managed to convince myself the surgeon was a quack who didn’t know anything. I started imaging that his office staff had taken all those photos as part of a scam, that they routinely convinced naïve, unsuspecting parents of children with albinism to undergo surgery as their only hope.

I watched Geoffrey closely all afternoon and while once or twice I saw his head tilt to the right, it wasn’t nearly to the degree I’d seen in the doctor’s photos. My nanny shook her head in disbelief when I told her. “I bet he was just looking in that direction because he heard your voice,” she said.

But then the next day Isabel, one of the physical therapists for Birth to Three, came to do a consult on Geoffrey. She was Jo Jo’s therapist for three years and I adore her. “He looks great,” she said as she lifted him up in the air. “Great truck stability, great muscle tone.”

I sat beaming like the proud mama I am. “He’s just starting to crawl,” I boasted.

Isabel looked up from her exam. “That’s early,” she said. And then she stared at my son, who was sitting, playing with a toy, and frowned. “I don’t like that head tilt,” she said. “It’s very subtle, but it’s forcing him to use more muscles on his other side.”

I froze. There was Geoffrey, doing the same exact head tilt I’d seen in his photos yesterday. Suddenly, it was so obvious to me I wondered how I could have ever missed it.

“The specialist we saw yesterday wants to do surgery to correct it,” I said weakly.

“Well,” Isabel said as she stood up, “We need to keep an eye on it.”

When Jamie came home that night, I told him about the physical therapy session. Our camera had just come back from the repair shop, so I wasn’t sure if he was listening to me. “What did I just say?” I asked, irritated.

“You think the doctor was right and he needs surgery,” he said, and then he stopped fiddling with the camera and stared at the picture screen. “Holy s—t,” he said.

I came over to look. He was scrolling through some pictures of Geoffrey, and in each one was the same, identical head tilt. In some photos it was very mild, in some very pronounced, but there was no doubt about it. It was there.

It was pretty apparent that not only was this new doctor not a quack, he’d been able to pick up something the other two specialists had completely missed.

That night, I took off both my contacts and walked around the house. I’m about 20/250 in one eye, and 20/400 in the other. I closed my right eye and stumbled around the bathroom in a blurry haze. That was what life was like with 20/250 vision, I imagined. Then I closed the other eye and went into the kitchen with 20/400. Even worse.

“What are you doing?” Jamie asked as he walked into the kitchen. I was hunched over the table with the New York Times practically on top of my face.

“Pretending to be Geoffrey,” I said defensively.

He rolled his eyes and walked into the family room. I followed him. I saw a big black blob on the couch and had a momentary second of panic before I realized it was Ivry.

“This really sucks,” I said. I started to cry. “If his vision is this bad, I have no idea how Geoffrey’s ever going to function.”

Jamie looked up from the Wall Street Journal. “I really don’t think he’s going to end up with 20/400 vision,” he said patiently. “And if he does have such poor vision, then the fact that he’s able to do all the things he’s doing now means our kid is going to be a frigging genius.”

He’s right, of course. I watch my son as he rocks on his hands and knees and pivots himself around to grab a toy and I’m amazing at how easily he seems to have made sense of his strange new world, at just seven months.

I wish I could make more sense of it, or feel more at ease with it all.

We’re not rushing into surgery. Over the next few months, we’ll see more specialists, continue or therapy, watch the head tilt to see if it worsens or, as the nystagmus continues to improve, if it eventually even goes away.

But it’s at these moments that I remember I’m in Iceland. Most of the time, it’s gorgeous, with its dazzling geysers and Northern Lights, but there are those moments when I feel the chill of the Arctic wind deep in my bones and I wonder how I’m expected to thrive here.

Then I look at my Geoffrey, my dazzling little Viking with his white gold hair and his blue gray eyes, and I know that this is the exact right place for him, that it’s the exact spot to nurture his exceptional qualities.

My boy will show me the way.

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Responses

  1. What a beautiful post…love that Viking! I’m so sorry to hear the rough news, but also want to give you GREAT applause for your inspiring attitude…and thank you for sharing your struggle, and your lovely family.

  2. Hallie, sorry to hear this disappointing news, but I know you’ll keep the faith as you always do. Your children seem to have a knack for defying the odds, even at their early ages.

  3. @languagechick — why would you say such a thing? Have you read this blog? I highly recommend it…and I hope you do. Because it will stop you making ignorant, mean and stupid comments, if you know the background. We don’t get to choose our children’s traits in advance, as if we were building a burger at Harvey’s…

  4. inappropriate, languagechick. these children are all loved and thriving.. what more could you possibly need?!


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