2002

I want to share a bit more insight into the disability experience in the simplest way I know how, from my perspective. I've read a lot of literature this past year about people with disabilities talking about disabilities, but I haven't seen anything about siblings of people with disabilities. 

I'm not trying to be selfish, I'm just trying to add to (or create a voice) for a group of people that I'm apart of. So to anyone reading this who knows how to put on leg braces, assemble wheelchairs, or has a favorite hospital foodcourt meal: this one's for you. 

*18 percent of the American population has a disability.

I was jealous.

Jealous of how you had the name brand shirts and the special plans and the parent-time. 

Jealous of how all the relatives came to you.

How the tree used to be a little off balance with gifts Christmas morning

And how when I would lock myself in my room no one would notice, but everyone heard your cries. 

Jealous of how we ran out of money after you; 

Because you needed the therapy, name brands, and Nike to fit in. 

I had my body.

I was scared, you know,

Living out of emergency rooms and growing up in doctor's appointments. 

And I was mad at myself for being jealous

For thinking that I deserved more. 

It wasn't bad

It could have been much worse 

What you have to work through is much worse
Not the fact that you can't walk, but the fact that the world views you as disabled.

I had thrift store clothes that isolated me

You had your body.

It shouldn't have been that way.

There should have been two healthy babies,
There should have been identical Halloween costumes.

There should have been 7 chairs at that dining room table.

Not 5 and a stander.

And it's weird how there aren't many memories from those times, but the ones that I have are so vivid:

Leaving the floodlights on while I went to bed, praying everyone would be home before I woke up,
But not all of our prayers receive the answers we want.

I remember oxygen tanks in the pantry, in case you had an emergency.

Casseroles,
Hand-washing and incubators.
Looking down at the little brother I never spoke to, yet speak to everyday.
I remember braces, walkers, wheelchairs, standers, OT, PT, horseback, surgeries, and bicycles 

And I just wanted a shirt.

I feel stupid for ever being upset,

For ever being jealous of your needs.

It was unfair of me.

I love you.

And living like this with the 18% is what made me.

Made us.

Made you.

Living with the 18% that no one sees.

That seems like one person.

The 18% that learns in transformed closets, 

That grows up in hospitals, 

Comes in through the backs of buildings

With removable ramps, as if access is not permanent. 

We are more now than we were in 2002 because of what we lost.

Because we know what it means to lose, to sacrifice,

To pray and plead and not receive, but still praise.

We know what it means to carry and to have a bad back at age 15.

We know what it means to walk, and how much it means, and how little it means.

And we know that our lives changed forever that November and that it has been a journey, but I am so grateful for every wheelchair inaccessible step we have taken together. 

Because in the end we are all together. 

All 7 of us.

Because what doesn't matter is the name brand shirts, or the Christmas presents, the casseroles, the money, the horseback, the OT, the PT, or the surgeries.

What matters is that you have shown us what it is to be a real family,

And to be a real person.

Because a real person is more than just his or her body

A real person is a soul.