A(n) (un)Common Family

I could feel my eyes burning, welling up with tears as we sat in the eye doctor’s office.

“Legally, he’s blind,” the doctor said about my 2-year-old.

I feebly tried to argue, as if my words would undo the diagnosis. “I know he can see small things,” I said. Mattix wasn’t very verbal yet, but he would point to airplanes, made tiny by their distance way up in the sky, and say, “Plane!”

How could he do that if his vision was poor enough for him to be considered legally blind, I wanted to know.

I’m sure that I sounded like any parent who’s unwilling to accept heartbreaking news about her child.

It was difficult to absorb the other details after that. I was there alone with Mattix, two years old at the time, and Molley, not yet one. I thought I knew what was coming: a diagnosis of strabismus, which was apparent to me from the beginning – in photos even before we brought Mattix home over a year earlier.

At the time, it was the least of my concerns. Mattix had a lot to deal with and we had a lot to address. We’d made a list to tackle with his pediatrician in order of necessity. So I expected to hear what both his pediatrician and I thought was the case.

And when I  heard something very different and much more serious, things got fuzzy. But I will never forget one part:

“This won’t help you now, but kids with this condition that have his abilities, they do well in life. They’re quirky in a way I can’t explain. They’re very well-liked. They’re happy and funny. People are drawn to them. I have a lot of patients like him and the lack of vision and other issues doesn’t hold them back.”

I heard him, but he was right. It didn’t help me in that moment. All I was thinking about was how school would be more difficult, how he’d never be able to get a driver’s license at 16 along with his friends, how he’d ride the bus to work as an adult because he wouldn’t have any other options.

His condition – the one that the doctor thought made him blind – isn’t in his eyes. It’s neurological. It’s a congenital defect and there’s nothing to do to “fix” it or help improve it.

(The hundreds of hours I spent on Google assured me of that. And so did his doctor, who later made me promise not to consider going to a foreign country for experimental stem cell transplant treatments – that don’t work so far.)

Mattix’s optic nerves are less than one-third the size they should be. Based on that alone, it was very reasonable to conclude he was legally blind. Often with the condition, there is significant brain involvement that causes varying degrees of disabilities.

So we went through the brain MRIs under sedation, the appointments with the Foundation For The Blind and other tests.

And in the end, nobody could explain it, but Mattix isn’t blind.

He has to work harder than other kids to use his eyes. But his vision is sharp. As bad luck would have it, he does have a completely unrelated eye condition that required surgery and will require additional surgeries. And that’s the one that gives him headaches, tires his eyes considerably and makes it harder to read and keep up in school.

But nothing has held him back. The same eye doctor that diagnosed Mattix’s conditions is the one who did his surgery and who we see several times a year. He’s a blessing (and an unbelievably skilled surgeon – one of the best in the state). He generously gives his time, helping low income children who wouldn’t otherwise receive services. He’s volunteered overseas helping children in orphanages. He’s a special person.

And he was right.

Mattix is different.

People are drawn to him.

He’s well-liked. And quirky. And kind and compassionate.

And he has an outlook on life that I can’t totally wrap my mind around.

He’s so funny. He has an incredible sense of humor and makes even the most difficult situations entertaining.

He can make a room full of people laugh, even during an eye exam.

A sister couldn’t ask for a better big brother. He’s looked out for Molley since the day she came home, which happened just after his second birthday.

A mom couldn’t ask for more in a son – kind, loving, sweet.

He never quits and never gives up.

“Most kids who have no challenges don’t try half as hard as he does,” one of his teachers told me.

Sometimes, by the end of the school day, his eyes are so strained his head is just an inch from the paper, tilted to the side, so he can keep trying. But he does just that – keeps on trying.

He keeps on trying so much, in fact, that he’s exactly where he should be at the end of his Kindergarten year. At the mid-point, we had a conference with his teacher. She brought up the possibility of him repeating Kindergarten.

I’d guess that most parents need some time to adjust to that thought, but Ed and I are realists and we want what’s best for Mattix. So we were very open to the possibility, and we agreed we’d revisit it toward the end of the school year.

But by the end of the  year, it wasn’t even a consideration. With help from his teacher, who is another blessing and just so happens to have a wonderful background in special needs, additional programs at school and a lot of hard work on his part at home, Mattix showed us all what real commitment looks like.

At one of our conferences, his teacher showed me this picture.

She has the kids draw a picture of themselves toward the beginning of the school year. She said most kids draw themselves in their favorite shirt, maybe, or with their dog or other pet.

Mattix drew himself with a big smile on his face under a rainbow. And a giant happy face. And the sun, also wearing a giant happy face.

‘Cause that’s how he sees life. It’s bright, happy and positive to him.

Today I’ve been his mom for exactly five years and six months. Never in a million years could I have expected to parent such an incredible person. It’s my job to  raise him, but he teaches me and the rest of us amazing lessons on a daily basis.

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