amelia · clinically isolated syndrome · writing

Beyond Snow Days, Chronic Illness, and All the What-ifs

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I get accused of not playing with my kids very often.

So at the risk of breaking my almost-37-year old neck, I played this weekend. By the end of Sunday afternoon they’d reduced the neighbor’s hill to ice and turned their cheeks the color of summer vine-ripened tomatoes.

Ah, summer. Come on back now.

As much as I’m learning to appreciate the hush of January and the sanctification of snowy days, I’m not a winter girl. I’m a curl up by the fireside and read a good book and drink a lot of coffee and make gigantic pots of soup while wearing fuzzy socks girl. Because I firmly believe winter should last about a month, give me one good snowfall, and then let’s move on because THE BEACH.

And also, I really, really hate to be cold.

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Apparently I’ve passed these traits onto my oldest. She’s reading Serafina and the Black Cloak right now. I get it next.

 

Three winters ago we buried my Granddaddy on the coldest January day Georgia had seen in decades. It was six degrees. We wrapped my grandmother in a down sleeping bag beside the gravesite and I spent the next three months trying to get warm.

Two winters ago we checked Amelia into Scottish Rite in January and then in February, saw the demyleniating disease specialist in Birmingham. We left our other children scattered all over with friends and family and school was cancelled for days because the wintry mix north of 85 was constantly relentless.

So I don’t usually play in the snow. The cold gets deep into my bones and freezes my toes and I think of Laura Ingalls and the long Dakota winter, and I take back every wish I ever had to be a pioneer girl on the prairie.

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See I learned a little something from my photographer friends about light. But that grin is all him. “I’m reading the Bible, Mama!” Don’t be fooled. He’s not always that sweet.

But yesterday, with the sun hanging low over that icy hill, and wearing Joshua’s snowsuit because the oldest daughter is now tall enough to wear mine, I sat on a plastic sled and careened down to the ditch and up onto the lane we now call home. At first, no one wanted to play. They’d already been out, we’d let them turn on screens and get cozy, and by the time I decided to retract my offer, my almost-seven year old was pulling on those hand-me-down Georgia duck boots our friend passed on this weekend and telling me let’s go.

For the past two years, every time I look at my beautiful daughter with her waterfall of dark hair that’s fallen out in a center patch on her scalp, with her right arm she only uses for writing and drawing pictures beyond what should be her normal scope, with her leg that hitches when she walks and wears her and me out to a physical and emotional impasse–I have only seen her limitations, her unknowns, her what ifs.

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If Amelia falls down, I worry it’s her muscles tingling and not a mere mis-step. If she’s overly tired and weepy, I assume it’s her inability to cope with fatigue, rather than simple overexertion of natural play. If she can’t grip her pencil one day, or screws up her face while reading because she can’t get the words from her head to her lips, I am ready to call the neurologist or the occupational therapist or anyone who can make sense of what may or may not be happening in her little body, that despite all its mysterious challenges, continues to grow and develop and change. She lost her front teeth and they’re taking months to come in. Surely that’s a sign.

Yes. It’s a sign she’s nearly seven and growing up and I’m missing that because all I’m seeing is what may or may not be happening inside the body her therapist has always said is strong. She compensates so well, they say. She doesn’t slow down. She’s a fighter.

But most of all, she’s my sweet and sassy and steadfast girl and I’m missing her when I keep looking for an it.

I flew down that hill with her again and again. This daughter of mine who makes me see the world and her in it–alive and vibrant and unmarred as the snow when first it falls.

 

 

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