Ep. 60: Blindness

He was officially considered deaf-blind, and I didn’t know how we could possibly move forward.

This diagnosis was a delayed one, found at 5 months old instead of at birth like the rest of them. And it hit me like a ton of bricks. No, strike that. It hit me like a thousand tons of bricks. On fire. With explosives.

And yet, I had known all along.

Deep down inside my mommy gut, I had known for months. Those concerns were only just being taken seriously to warrant an appointment with a specialist.

In an old blog post from the time we were awaiting his scheduled appointment with pediatric ophthalmology, I lamented

“When I’m at church, I try not to notice the other babies around his age gazing into their mother’s faces. They goo, they smile, just as he does. But it’s at their mother’s faces. Those faces that have no idea how lucky they are. I try not to look. My heart breaks. My throat stings. My son is broken.”

In the proceeding months, I had noticed that our sliding glass door had his heart and his eyes. It had the smiles and the “goo”s far longer than a typical newborn. At 5 months, he hadn’t once looked at our faces. And the lack of visual connection was destroying my heart.

Fast forward a few weeks, and Juston and I found ourselves in the office of a very educated and experienced ophthalmologist with a total lack of bedside manner. After condescendingly reassuring me that I was probably overreacting and his eyes likely fine, he examined his eyes.

I sat there torn between the desire to prove this know-it-all wrong, thus proving my mommy-gut right, and the desire to be proven wrong and told his eyes were actually fully-functioning.

Well, my mommy-gut merited a standing ovation.

A few quick checks with his fancy, lit-up tool revealed optic nerves that were shorter than average (like the rest of him).

“He has optic-nerve hypoplasia.”

“What does that mean?”

“Glasses won’t help. There’s no surgery for this. His optic nerves are just short.”

“How much will this affect him?”

“Well, it’s a spectrum. On the one end, people are hardly affected. On the opposite end of that spectrum, they’re completely blind.”

We left his office in a stupor of despair and in the throes of grief. How could our son go through yet another thing? What else could possibly be broken?

I somehow drove Kimball and myself home after dropping Juston off at work. As I came in the door, I told the babysitter through tears, “He’s blind. We found out he’s blind.” She gave me a quick hug and left. As much as I wanted to lay in bed and just process and cry, I had to keep myself together enough to put shoes on Wendy and drag her and Kimball out the door to a pediatrician appointment for Kimball.

That day was truly hell and I got through it only because I had no other choice.

Settling into the label and lifestyle of deaf-blind was not easy. We soon had a therapist from the school for the blind added into our already overcrowded days. She was kind and brought shiny toys that Kimball loved, but that was about all the benefit she gave. We switched to a different therapist from the school for the deaf and blind, Sundie, who had training in the dual loss. She is the only one of her kind in the state, and we fell in love with her immediately.

To our disbelief and total joy, we started noticing small improvements in his vision. He began to look at our faces. He still much preferred the window, but even the smallest moments of his noticing my face was exhilarating. Time went on and he started recognizing us as we walked into the room. He knew when his dad came home, indicated by his excited arm-flapping motions.

The progress was something we didn’t count on. It couldn’t have been predicted, and yet it was happening.

Two years have passed since that fateful day of confirming his blindness, and he is a totally different child. He runs and climbs around the house, playing and laughing, his blindness undetectable from the average onlooker. He still adores lights and windows, but I no longer compete with them for his loving gaze. The eye contact, the sweet, round eyes looking back at mine fill me with joy to the brim. We still don’t know exactly what his world looks like to him, but I do know my face is a part of it, and that of his sister and dad.

And that is a miracle I didn’t dare hope for in the early days. It’s given me an appreciation that couldn’t have come any other way, and it is something I’ll cherish forever.