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She Dances

September 30, 2012

A waltz when she walks in the room
She pulls back the hair from her face
She turns to the window to sway in the moonlight
Even her shadow has grace

A waltz for the girl out of reach
She lifts her hands up to the sky
She moves with the music
The song is her lover
The melody’s making her cry

So she dances
In and out of the crowd like a glance
This romance is
From afar calling me silently

A waltz for the chance I should take
But how will I know where to start?
She’s spinning between constellations and dreams
Her rhythm is my beating heart
~Josh Groban

She is dancing. Have I told you? Our little deaf autistic girl who couldn’t walk, who ignored everyone in the room is dancing. And she’s not just dancing. She is dancing with us.

We saw the mitochondrial neurologist last week. Mary has been having increasing fatigue and more of those apparent seizures. We’ve also discovered that she just can’t seem to regulate her body temperature. Generally speaking, these are not good signs. We talked about medications, altering routines, and adding supplements. We discussed the probability that we would need to start thinking about ordering a pediatric stroller (kid’s wheelchair) for when she outgrows the stroller she has, since this fatigue thing just isn’t going away.

Then the doctor stopped, shaking her head,
“You know when I first met her, I was really worried. I was sure we were going to a dark scary place with her very quickly. Neurologically, she was really going downhill.”
I nodded my head, not wanting to remember the dark fear that surrounded us then.The ongoing march of regressions, the silence, the distant detached look in Mary’s eyes. That crushing weight on my chest every time I looked at my sweet baby girl and wondered how long I would get to keep her.

She paused, thoughtfully. “I really don’t feel like that with her anymore.”
A smile spread across both our faces. An understanding that there is no more fear, even though we have absolutely no idea what Mary’s future looks like.

Because my girl is dancing with us. She is here. She is healthy right now. She smiles again. She laughs again. She absorbs us with her presence.

She has had an army of people praying for her and cheering her on- people she has never met in many cases. She has had a slightly smaller army of therapists encouraging her and pushing her forward. These are the only explanations that the doctors have for her right now. She baffles and amazes them each time they see her.

She has taught us, time and time again, how important this moment is. Right now. And that is the only way we can truly enjoy the gift that she is. Not by worrying about the future, but by being with her. Right now.

And right now,she is here. She is dancing. With us. And she is beautiful.

20120930-144307.jpg
Mary watching a parade earlier this summer.

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4 Comments leave one →
  1. October 1, 2012 7:25 pm

    She sure is beautiful!!! Mary’s story melts my heart and reminds me every day that hope and prayer bring healing and miracles!!!

  2. deafchildrennear permalink
    October 9, 2012 6:17 pm

    Wow! Love it! I can relate. Doctors have given us that same doom and gloom talk about Adam’s prognosis.
    We just look at them and reply, ” ok thank you, now we will let Adam show us what he can do.”
    I truly believe that if there’s a will there’s a way and as long as children like ours have that will then mothers like us will move mountains just to make the way.
    Continued Blessing…

  3. Mema permalink
    October 14, 2012 9:37 pm

    Hold her close for us. We are missing this moment of blessing, this grace. Hold her close for us. Love you, Erin.

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