I'll never forget the moment I learned my third child would be legally blind. I was sitting in a pediatric eye doctor's office, holding my 4-month-old, Geoffrey, as the specialist explained that my baby had albinism, a condition with low levels of pigment in the skin, hair, and eyes that causes vision loss.

Hallie Levine Sklar
August 17, 2012

In this three-part series, part of a special feature on resilience in the September issue of Health magazine, our writers share their personal experiences of overcoming adversity.

I'll never forget the moment I learned my third child would be legally blind. I was sitting in a pediatric eye doctor's office, holding my 4-month-old, Geoffrey, as the specialist explained that my baby had albinism, a condition with low levels of pigment in the skin, hair, and eyes that causes vision loss.

My husband and I stared at the doctor, stunned. We weren't strangers to devastating news: We had been in a similar situation four years earlier, when we had learned that our newborn daughter, Johanna—our first child—had Down syndrome. It had been traumatic, but within a few days we fell deeply in love with Jo Jo and were determined to move forward together as a new family.

When Jo Jo was 17 months old, she got a brother, Theodore (Teddy), and then, almost two years later, I gave birth to a beautiful porcelain-skinned baby boy with white-gold hair and cerulean blue eyes. We hadn't given much thought to the fact that Geoffrey was so fair, but when he was about 3 months old, I noticed he wasn't reaching out for objects and that his eyes were moving back and forth. Our pediatrician sent us to an eye doctor. Now we were here.

"How bad will his vision be?" my husband asked.

"I don't know," the doctor said.

"Will he need a cane? A seeing-eye dog?" my husband asked, his voice rising in frustration.

"I don't know," the doctor said. "I know very little about albinism. I'm sorry."

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As soon as I got out to my car, I started screaming, deep visceral screams that seemed to wrench right out of my gut. I already had one child with a disability—how could I handle another one?

I let myself cry for two days straight, then I told myself to get it together for my kids' sake. I decided to take control and email everyone I knew, telling them about Geoffrey. I didn't want people to pity us, I wrote, but if they had any information, to pass it on.

I heard from people with albinism who were professors and raced sports cars and started tech companies. I heard from parents of children with albinism, whose kids were playing soccer and making the honor roll, all with minor modifications such as reading large print text. But the best advice came from a man with albinism, who told me to just "let your kid be a kid." Once I got those emails, I began to feel a sense of optimism.

Now, Geoffrey is 15 months old and he's doing great. While he still has some fine-motor delays, it's clear that he's one determined little guy.

The biggest lesson I've learned is I have to take care of myself. So I get up at 5:30 a.m. every morning and go running. Some days it's brutal, but it's my alone time. And when my mind is going into overdrive, I take a breath and remind myself to enjoy time with my little ones—whether it's splashing with them in the kiddie pool or snuggling before bed—rather than obsessing over what's out of my control, in the future.

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