Wednesday, May 22, 2013

Un-Defining Disability

Disability.

This is a word that carries with it heavy weight in this world. But most days, I redefine it. Actually, I un-define it. I suck all meaning from this word normally paired with such negativity, and I allow it to float silently above us. It is very present, and it worms its way into more decisions than I give credit to- but it means nothing. It is just a word. A word that I don't allow to steal any beauty from our life with Addison.

Most days.

There is still the occasional day- actually it's down to just a moment- when this is not true. A brief slipping in time when the negativity reenters my mind. The full weight of meaning returns to the word disability and my breath is taken away. Just for a moment.

Like the moment that occurred today in the exhausted state of a full day of doctor's appointments at a facility two hours away that I had to wake up my children and leave for at 6 am. That moment- after seeking second opinions on Addison's sight and hearing- I learn that not only will we have to once again do glasses, but that she has hearing loss that will most likely require hearing aids in the near future. This moment occurred after a day of Addison's newly cut down orthotics making the leg warmers ride up. Exposing them. Exposing the disability.

As my breath is taken away with all of this at once, I think about how I accessorize her orthotics. How I used to make them pretty and girly with such fun leg warmers until that strap was cut away last week and now they won't stay in place. I think about Addison's tiny ears wearing hearing aids. I picture her face covered in glasses. All three of these things are not hugely negative in and of themselves, but when I picture all three of them together, taking over Addison's tiny frame, one word jumps into my mind- disability.

In that moment I find myself unable to continue my daily game of sucking the meaning out of that word. I feel the full weight of it rest upon me. I see how it affects my daughter. How it affects our whole family.

This is not something that is going to go away. This is not something that will get better over time. This is our reality. The staggering implications of that becomes more than I can wrap my mind around. There's no way to spin it to make it seem happy and amazing. There's no to cover the hard with a soft, pretty quilt and pretend that it doesn't exist. Disability is a very real part of our life.

But then as quickly as it happens, that moment is gone.

I look to my little girl. The one who is melting down because she missed nap time. The one who is standing at the door of the audiology testing room saying and signing "bye-bye" over and over again. The one who is so fiercely independent she didn't even want to sit on my lap for the testing. She wanted her OWN CHAIR, thank you very much.

And when I look at my girl- really look- that word disability once again begins to float weightless over our heads. Meaning nothing. Saying nothing. Projecting nothing.

She smiles at me. But only because I'm opening the door for her and that's exactly what she wanted. She's singing now. Loudly. While shaking the jingle bells percussion toy that she stole from my purse during my talk with the doctor.

I grasp in my hand new prescriptions, make plans for next appointments, and continue watching sweet Addison swagger down the hallway- orthotics fully exposed. But she doesn't care. Because they help her walk so much better. Just like the glasses will help her see better. And the hearing aids will help her hear better. 

Addison doesn't care that she has a disability. She just wants to live- fully. And if modern medicine can hep her do that with more ease? The more she enjoys and thrives in the process of life. That- to me- is a win.

After she's all suited up in her new gear, at first glance perhaps a stranger's thought might include the word disability. But if they were to look carefully at the mom holding the little girl's hand, they should also include the word thankful in that same sentence. Because to that mom, that first word doesn't mean a blessed thing.
Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.

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