We are two of many in through the looking glass.

We have a children’s book for H that describes a day in the life of a child with our shared eye condition. I bought it with the hope that it would help him feel some agency over the somewhat unpleasant experiences that come with managing this condition.

I choke up everytime I read the last page:

“Lots of children all over the world wear contact lenses, glasses and patches.”

When I was growing up, I was the only person I knew with this condition. When I would describe it to adults, they would often look at me quizzically, seemingly convinced I was lying or confusing details or even just simply unable to comprehend the words in the context I was using them in. There were no resources then, no support groups, no books, no playful t-shirts.

I was alone, but I’m not sure that I consciously registered it until reading the words of this book with my son.

Things will be different for H. And it’s mostly thanks to the reach of the internet, along with some amazing parents who, when they saw nothing existed for kids like us, just went out and created it themselves.