Patient Story

Kira’s story

Age 2

It seems like such a stupid thing now, but I was upset she wouldn’t become a professional baseball player….

When your kids are born, you expect to dream of all the big things they might do, at least for a little while.

An artist, a surgeon, President of the United States!  

Our kids are supposed to grow up slowly- reveal little by little who they are. Likely slowly unwrapping a present.

But at two days old we sat in the office of an eye doctor, who did not understand the gravity of all that I had planned. And he told us quite matter of factly, that she’d never have depth perception, but with luck she’d be able to see quite well. 

At four months we took her to be evaluated for physical therapy. Not because it seemed like she needed it, but because we knew her vision was poor and she’d need all the help she could get. And at each visit it got worse- she missed milestones, didn’t roll, didn’t sit, didn’t talk. It wasn’t just her vision, I realized- something big was wrong.


And by the end of her first year, my dreams had become so retracted, that all I could hope was that she’d be okay.

At a year in six months, and after a long list of specialists and tests and blood samples and prodding, her diagnosis finally came.

In some ways it was a nightmare, but it also was a relief- because it let our dreams grow back.

Now we dream she’ll stand up, we dream she’ll sit. We dream she’ll feed herself cookies. We dream she’ll use the potty. We dream she’ll feed herself a cookie. We dream she’ll wheel her own wheelchair down the street at my side.

And we know all of these things will be hard, but we also know they might be possible. Because we know, at least now, that the world has no plans to take her from us if we are careful

And things are much easier with more hope each day than less.

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