The kids and I were on a playground on Saturday when I heard another couple discussing Arlo’s sunglasses. I couldn’t find his regular ones and so I had put him in a pair of too-big green ones that we keep in the car as back-ups.

We do not go outside without a hat and sunglasses for our son. Arlo’s albinism causes a condition called Photophobia that makes his eyes extremely sensitive to sunlight (and even some bright indoor lighting). If you have ever experienced the discomfort of walking into a bright room after being in a dark one, you can get a small sense of what it is like for him. He can’t tell us what exactly he is experiencing yet but others with the condition describe it as often blinding and very painful to be outside on a bright day without sunglasses.

When he was a tiny infant, we noticed how he would try to shield his eyes and close them tightly whenever we took him out. It wasn’t until he was diagnosed with albinism that we realized just how uncomfortable he had been. Even now, should we find ourselves in a situation where it is bright out and  he doesn’t have his glasses, he has learned to tuck his head into my shoulder to hide his eyes.

So we are diligent about hats (which provide some shade for his eyes) and sunglasses. We have several pairs, including some high-end ray-bans which under most circumstances seem frivilous to put on a toddler - but they have high quality, dark lenses and fit his face the best. He has always hated the strap-on type that most folks in the albinism community recommend, so we go with what works.

At the park on Saturday, his back-up sunnies didn’t fit his face well and would slip down his nose every few minutes. As a typical toddler, there are some days when he is just not in a mood to wear a hat or glasses, no matter how uncomfortable he is, but on this day, he was trying his best to keep them on.

I kept going over to help him adjust them and tried to tuck them into his hat to help him keep them on.

I heard the woman next to us say loudly enough for me to hear, “How sad that lady is forcing that little boy to wear all those stupid accessories. Just let him play.”

It made all of the blood rush to my face and tears fill my eyes. My first instinct was to go over there and give her a piece of my mind, but I didn’t. I took a deep breath, and then another, and collected myself. I watched Arlo and Everly chase each other around the playground while he kept pushing those poorly fitting glasses up his nose over and over again. 

I wished he could play without all of those “stupid accessories” too but I was really proud that he was patient enough to try and keep them on, despite the fact that they were clearly an annoyance. We are teaching our son to advocate for himself and want to normalize any of the measures we have to take that might make his experience different from most children.

Arlo’s albinism means we have to be obsessive about sunscreen (we always carry a bottle with us) and very thoughtful about when and where we take him to play. We know all of the playgrounds in our area that are covered by big shade trees. We carry a pop up tent and an umbrella in the car at all times to provide extra shade if we are somewhere that doesn’t have any protection. While we want him to learn to think about how to protect his skin and eyes as he grows, we never want to make a big deal out of it. We want him to know that it is just a thing and that every single one of us has a “thing” whether others know it or not.

As for the lady on the playground… I suppose I should have confronted her and explained why he had to wear sunglasses in the first place. It would have made me feel validated and possibly made her feel ashamed for judging us  - but instead I just felt compelled to ignore her. If there is anything parenthood has taught me, it’s to stand tall in what I know is right for my kids regardless of judgement from others.

The children were oblivious to the whole thing, but it made me think a lot about the confidence we hope to instill in them. Speak up when you want to, but don’t feel like you always need to explain yourself. We do what we have to do and we make the very most of what we’ve got.

And for me, the thing I got was two beautiful, happy kids, running around a playground and a little boy who makes his mama so proud every time he puts on his hat and glasses.

Love,

M