“I Admit It, I’m Scared For my Son as He Grows Up” - Raising a Child With a Disability

Danny had a feeding tube placed at fifteen months, and growing and gaining weight have been a great concern his entire life.

We have tracked every calorie and ounce of water.

We have worked for each notch on the growth chart, and we are so proud of how far he has come.

Recently however, there is a nagging reticence I experience when he logs yet another inch or pound.

Danny is getting big.

He is tall and lanky and adorable.

He is getting big.

For many parents I assume, this resistance to aging is attached to a desire to forever cradle your baby and a sense of nostalgia for when they were tiny.

For me, I think it goes much deeper and is more complex than that.

As Danny grows, the divide between him and his peers widens.

Our path looks much different than theirs.

Plus, he’s heavy.

My back is starting to ache.

It’s getting more difficult to just carry him through a crowded restaurant.

I have to look for accessible places to change, special grocery carts, and the drool on his chin seems to be a bit more obvious to everyone.

Danny is different.

When Danny was first diagnosed, there was a certain ability to pass off as a typical family.

Sure, his head drooped a bit and I carried him absolutely everywhere, but to the random passerby, we did not stand out.

I could fiercely protect him from the world.

We didn’t receive any extra attention (except for his gorgeous red hair), we didn’t feel the need to explain, and we could shop or dine in anonymity.

People remember us now.

And really, they are so kind.

We have been gloriously lucky in that we have a wonderful community of people who reach out to us, who adore our son, and who offer to help at every turn.

It’s just sometimes I’d really rather just not need it.

Sometimes I just really wish the attention Danny got was for being a typical toddler having a typical meltdown in the grocery store aisle.

That is not why people notice Danny.

People notice him because of his wheelchair.

People notice him because he can’t quite look them in the eyes when he smiles.

People notice him because he doesn’t talk.

Most days this is really and truly okay.

It doesn’t faze him or me and we are so grateful to the many people we see and talk to daily.

Once they stop and talk with Danny, they are amazed by his spirit and his sense of humor.

He is acutely aware of everything that is done and said around him, and we mostly chuckle through the inconveniences in our world.

I just worry that as he gets bigger, these inconveniences will turn into barriers.

I meticulously mentally record every restaurant’s restroom, every entry way with steps, and every narrow hall.

I worry that as he grows more dependent on his chair, his world will shrink.

As his need for space to change grows, his opportunities diminish.

And then I become a bit more resolute.

I will not allow it.

I will roll the chair over my back before it holds him back.

I will solicit our community stores and facilities for a space to change.

I will not let his chair limit his ability to access the world.

Where there is a will, there is a way, and I will ensure we can do it all.

There will just always be a part of me, wishing he was little.