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Small Steps, Big Dreams

October 29, 2011

 

She remembers when she first got her wings
And how she opened up that day
she learned to sing
Then the colors came, erased the
black and white
And her whole world changed
when she realized

She’s a butterfly, pretty as the crimson sky
Nothing’s ever gonna bring her down
And everywhere she goes
Everybody knows she’s so glad to be alive
She’s a butterfly

Like the purest light in a darkened world
So much hope inside such a lovely girl
You should see her fly, it’s almost magical
It makes you wanna cry, she’s so beautiful

God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her strength to fly
Never let her wings touch the ground

– Martina McBride “She’s a Butterfly”

Absolutely amazing. That’s really all I can say about yesterday. On Wednesday night I was struggling with the uncertainties of more tests and more worries for my baby girl. Her pediatrician is concerned that there might be something more sinister behind her low iron counts than first thought. More uncertainty. More tests. More worry. Sometimes it seems like there’s no such thing as an easy doctor’s appointment.

So that was Wednesday. Then, last night (Thursday)we were out at the mall, buying an IPad so that we could offer Mary yet another option for communication. She finally started with a new TSS (behavioral aide)this week. This is something I have been really anxious about. It seems like these last few months I have been watching my daughter slip away from me. Even over these last few weeks, she has become even more withdrawn and has been slipping into her own world even more with her visual stimming. I am anxious to get this new therapy started, so that hopefully we might be able to draw her out of that separate world, even just a little, before she slips away from us even further.

So there we were, at the mall. Mary barreled towards the little play area in her walker. Once inside the play area, she did something amazing. She let go of her walker, and WALKED around the play area. There she was, walking. No adult helping. No big metal walker between her and the other kids. Just that sweet baby girl, walking. She’s been taking steps here and there, experimenting inside the house. But to see this, I can’t even begin to explain how amazing it really was. So much effort has gone into this one moment. All the fear and uncertainty melted away for that moment. So beautiful. So amazing. I still can’t stop smiling.

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