“Breathe, breathe, breathe.” I repeated the words over and over again in my mind. I stayed quiet too, quiet as a mouse. My body was shaking. In fact, I don’t remember when it didn’t shake. I only knew to breathe, so breathe I did. Sometimes it felt like I was fighting an angry tiger. I had to be so watchful. Dark shapes and shadows swirled around me. Tapping me, bending close, pushing things down my throat. Making noises I didn’t understand. Nevertheless, I kept breathing. I lived in a world where just a few seconds of not breathing could be crucial…that thought kept me on my toes, you’d better believe.”
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I imagine these thoughts went through Nebraska’s mind a year ago right before open-heart surgery. She did what she could, let other people do what she couldn’t and enjoyed the process in between.
She was down Monday going to about a hundred doctor appointments.
I hate the rounds of visits that are a constant for her, but I love seeing her as often as I get to see her. Boy can she move. She doesn’t crawl yet, but scootches wherever she wants to go. She shoves with her feet, or rolls over, or sits up and turns. The method takes a bit of time because she is a wool-gatherer, that girl. She likes to study things. She has no hurry. If a dust particle catches her eye, she watches it swirl in the sun light. If her feet are encased in socks, she scrubs them against the carpet until she has freedom from them.
Well on this particular day, she scootched over to the couch. It didn’t take long before she got one leg trapped under the sofa. No bother, she studied the carpet. She wondered what shade of blue it was, and who in their right mind would have blue carpet. She like the texture of it, grappled a bit with a single strand analyzing it.
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“Drat, here comes Grandma C. Most likely she’s gonna pick me up and squish me to her chest and snuggle. I have a hunch she tries to fix everyone’s problems, even when they want no fixing. Sigh…”
10 comments:
'Braska is so pretty- she really is. When my kids were little we had a friend with Down's; he was no woolgatherer. Always go go go, and those glasses never stayed on his face unless he was too engrossed in something to bother to fling them off again. His mom was a nervous wreck over him, and he enjoyed it. Seeing her pretty face with those glasses perched so neatly on her nose reminded me of him. :-) all that life! It's amazing how brave they have to be, too, with that condition.
Oh my goodness! She is looking wise beyond her years...doesn't she in that pic? Those eyes do it! It must come from all the watching & pondering...hmmm I wonder where she gets that from? :)
She's a beauty! I really had to smile in heartfelt empathy at your closing line about trying to fix eveyone's problems even if they don't want fixing! :) Me too! Hope all her tests go well.
xoxox,
Maria
Malady -- Thank you, she is pretty isn't she. I don't think Nebraska's mom is a nervous wreck, but she gets worn down with all the different therapist visits, doctor visits, and stuff.
freetofly -- Her tests went quite well, no eye surgery, the glasses are correcting the problem, no tubes in the ears yet and although she won't eat, she is gaining a bit of weight. I named that picture, The Thinker.
Is it a year already? She looks a lot healthier now... And what a cutie she is :)
What a beauty she is!
That photograph of her with all of those high-tech bits and pieces attached makes me want to cry. On one hand, it is awful that she has to have all of that done to her. But on the other, thank God that she can. When I was 15, I worked in a pediatric ward caring for a 13-year-old boy with Downs who should have had surgery when he was tiny. He was bed-ridden and could not swallow food properly; it could take up to an hour to get him to eat lunch.
My girls were both wool gatherers too, and to this day, wool gathering is one of my favorite occupations. I love sitting and watching dust motes (and given the state of this house, I have many opportunities to do this). We have a blue carpet too, but it doesn't bear close scrutiny.
Kim -- Yes its been a year since that awful time. But she is doing so much better.
Mary -- Thank you. I love that she studies everything so thoroughly. And if something bothers her, like a loud noise or strange house, she goes back to studying something familiar like her hand. It gives her great comfort. I also have a closet full of wool.
She is just the cutest little thing.
Karen -- Thanks so much.
How did I miss this post?
She's so pretty, I can only imagine she manages to pull heartstrings wherever she goes!
Yes, the round of doctor appointments seems endless! Sometimes --17 years into it, I still think... in other countries I'd get a stipend for this!
Kanani -- So true. Nebraska is down again this week with more appointments, which is why I haven't gotten around to blogging lately. It is a joy to have her.
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