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I looked over, and all I saw was her

26 Feb

Yesterday, Maura bounded off the bus, and instantly started her post-school routine – rub tummy and exclaim extreme hunger. (Don’t worry school, I know you feed her!)

Then she glanced at the car.

“Cocoa? I love cocoa!”

“You want to go to Starbuck’s?”

“YES! WOOHOO!”

And because sometimes, you just have to hop in your car and get Frappuccinos on a sunny spring-ish day, I grabbed my purse and car keys, and off we went to the Starbuck’s drive-thru that’s a couple blocks from our house.

Now, my radio is always set to a music station, and yesterday was no different. As I started the car, Coldplay started to play on the radio. Maura reached over, turned it up, and began to bop with the music. I did too. Because it was sunny and nice out and we had windows down and music up. It’s just what you do.

And I looked over, and there was Maura, grinning as only Maura can – with her whole face – happy in that moment, this almost teenager of mine.

And all I saw was her.

Not the girl she could have been. Not the ghost of what I thought she’d be. Just her, in all her glory and Maura-ness. This amazing creature who shares my love of music and Starbuck’s and facial features. This girl with her own sense of style and adventure. This daughter of mine that I’ve watched grow, who I’ve stressed and worried over, who I’ve loved fiercely, who still needs snuggle time, who likes her hair in ponytails and hasn’t figured out how to manage it on her own, but is trying to learn to do it on her own, because she never gives up on something she wants to do.

My forever girl.

It was a moment I haven’t thought about having. But when she was younger, it sometimes felt we were haunted by the child she could have been. You could see those moments of ability, and doctors who weren’t sure what was going on with her would give us the false hope that she might catch up to her peers someday. So much of our disability culture is about overcoming those disabilities – cures and inclusions and highlighting those who go off to college – and it can give false hope to those of us at a different level. One where college isn’t an option, where a cure isn’t available because we don’t know what we’re trying to cure.

So while we try to accept our child at face value, disabilities and all, the world is constantly reminding us of what could have been, what might still be, to be warrior parents who never give up until their child blends in. If we say “Well, she’s going to live with us forever”, we’re told we’re cutting her short, that we should dream of the day she’s independent. And then told to accept her the way she is.

Yes, it’s a culture full of mixed messages.

The thing is, as much as I’ve embraced Maura for all she is, I’ve had to do so in the face of a society that pushed me to help her blend in more. I was to accept her, accept her disabilities, but not truly embrace them but push for Maura to change into a more mainstream person. And because of that, I was haunted by this ghost image of what she could have been for so long that I got used to it.

Then yesterday, as we drove in the car, and she turned up the music, I realized that somewhere along the way, the haunting stopped. I don’t know why. Maybe because as her siblings have grown up as well, and become these independent people, I’ve been forced to let go in so many ways that I let go of things with Maura as well without even knowing it. Because that’s part of the parenting process – an eighteen-plus year Serenity Prayer, knowing you have to accept the things you cannot change.

Maura is who she is – a brilliant, long legged, elfin-like creature who has disabilities. All the positive thinking in the world won’t change her disabilities any more than it would change her eye color. And that’s okay. Because what I am positive about is our life. We will have an awesome life no matter what – though it does help that she enjoys blaring music and going to Starbuck’s.

She came back all smiles, which is all I could ask for

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6 Responses to “I looked over, and all I saw was her”

  1. Darcy Pennington Arnold February 26, 2016 at 4:48 pm #

    I love the fact that you give me perspective. Thank you for sharing your and Maura’s amazing journey!!

  2. Wanda February 27, 2016 at 8:00 am #

    I love reading your stories!

  3. Jane February 27, 2016 at 5:55 pm #

    Thanks for sharing these beautiful and profound reflections about your relationship and future with Maura.

  4. Paul Byrd March 1, 2016 at 6:59 pm #

    Phoebe – this really touched my heart.

  5. particlewoman May 30, 2016 at 6:50 pm #

    This is so beautiful! Just really poignant. I can tell it’ll be one of those pieces that stays with me a while. Thanks for sharing these thoughts. I am really enjoying going through your blog! (Can’t remember how I got here, I am exploring through your about page now, though. 🙂 )

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