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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amelia · birthdays · clinically isolated syndrome · writing

A Six Year Milestone (for Amelia’s Birthday)

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Dear Amelia,

Today you are six.

Once upon a time I marked these milestones pretty well with blog posts.

Well, I hit one and two and three and four… but there’s a noticeable gap for last year. I wonder if someday you’ll ask me why because you’ll have forgotten.

I’m not sure I want you to forget.

One year ago today, on your fifth birthday, we drove home from the Children’s Hospital of Alabama after meeting with a neurological specialist. We still had few answers and more questions.

You were just giddy that when you got home Ellie was here with her Gigi and had brought pizza and cookie cake and a big, giant balloon.

I remember your laughter the way I remember all the tears you’ve shed since the day of your very first scan. But, while I don’t want you to remember the trauma of an emergency CT or the IV or even the two days spent at Scottish Rite, what I do want you to remember is how very, very loved you are.

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God told Moses to build an altar. A remembrance. A place to never forget the deliverance.

Your little life is my milestone in so many ways. You are my altar. My place where I laid it all down and gave it all over and you have taught me to sacrifice in so many wonderful ways.

Having you gave me the courage to believe I could stay home. But on your first birthday, the bank was closed and Daddy lost his job. By the time you were two, you had loved me through the unexpectedness of baby brother, and when you were three? You were all sass and sweetness with a big, beautiful smile. At four, you were content home with me after your little school had to close, and you let me savor all the little moments.

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I didn’t even know I had this picture. I think you’re two.

Then you approached five and all my fears came to light.

But even in the worst times, you never stopped smiling. Your tears always dried and that blithe little spirit returned.

But sometimes, that’s taken a little while.

It’s been the hardest part of recovery, you know. The times that are darkest are when you’re not my sweet, laid-back Amelia. When you’re struggling without the words to name your own fears and this erupts in tantrums and stand-offs and screaming when I leave you at the door of kindergarten.

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One of these days I’ll make a collage of all the pictures I have where you’re dancing in the rain wearing a bathing suit and waving a frilly umbrella.

The doctors think maybe we’ve turned a corner. You’re stable, they say. Maybe, maybe never you’ll be 100% well, but then again, is anyone ever fully well? Aren’t we all weak in some way? Yours manifests itself in the stiffness of that not-so-little hand that grips mine as we traipse the steps to clinic at UGA.

You cling to me for dear life, because by the end of the day, you’re tired and balance is just one more challenge you’ve learned to compensate for.

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You hold me tighter.

And, baby girl, I’ll never let you go.

Happy Birthday, Amelia Hope!

amelia · clinically isolated syndrome · ePantry · motherhood

Why I’m Terrified of Viruses (and a $10 EPantry Credit!)

Amazing, isn’t it,  how something unseen can bring you to your knees?

One dreaded word gets thrown about like parade candy this time of year but with less enthusiasm.

Virus.

Respiratory. Hand-foot-mouth. And every mother’s nightmare that often appears at 3 a.m. and never quite makes it to the toilet.

Stomach virus.

Our nightmare with the lingering effects of a virus began long before my five year old’s diagnosis of Clinically Isolated Syndrome. Our first brush with just how tricky viruses can be happened in May 2013, a month most folks in my circle are happy to forget existed.

That’s when my husband presented with heart attack symptoms and was eventually diagnosed as having perimyocarditis. Likely caused by a virus like Fifth’s Disease which the kids had a month earlier.

Then, last fall, the stomach virus descended upon us with a vengeance. We don’t know, doctors don’t know, there’s just no way to know if three subsequent rounds of this virus triggered Amelia’s autoimmune reaction. Maybe the virus and its dehydrating effects worsened an underlying condition. We don’t know. But I do know and believe this whole heartedly–

The last time I remember feeling like a normal family was September a year ago. The last month we experienced with no virus, no sickness, no doctors visits.

So when the school starts sending home the warnings, when my girls tell me who got sick in the hall (or on the lunch table!), when all I want to do is wrap a bubble around our life and get away from it all–I go to my knees.

And my kitchen sink. Because maybe I can’t prevent Amelia from being sick, maybe I can’t keep everything at bay, but I can make sure my kids have clean hands.

We started an ePantry trial over the summer because I jumped on an offer from Modern Mrs. Darcy. Pretty sweet. Free candle. $10 credit. I ordered all purpose cleaner, sponges, and hand soap. Going greener and cleaner has been heavy on mind as I research all I can to help keep my daughter well.

There’s no guarantees anything will work, but if reducing harsh chemicals and enjoying the scent of basil all year long can at least help prevent a relapse, I’m going to try.

ePantry has been awesome. The products are excellent quality, but better than that is the customer service. When I realized my VIP trial was about to run out and I hadn’t placed another order, they gave me an extension and a discount. They respond to email–as in real people with names and personalities respond to email. They want to make this experience easy and affordable, and this company is dedicated to reducing waste and improving our environment.

Really, it’s a win for everyone.

Here’s a little snapshot of what I’m getting next time:

For almost three years, I’ve been making my own all-purpose cleaner. That’s been great, but it’s never worked all that well on wood, and like I said, with virus season upon us, I’m all for anything “disinfecting”. So we’re going to try these products from Method and Seventh Generation for dusting and bathrooms. What I love about trying them from EPantry versus Wal-mart is this: if I hate it, EPantry will take care of me. I’m a person to them, a customer.

How ePantry works
  • Take advantage of this exclusive offer by clicking here or on one of those great pictures.
  • Answer a few simple questions about your home, cleaning schedule, and preferred products. ePantry will make suggestions based on your answers.
  • Customize your basket! Add, delete, tailor it to your family and your budget.
  • Including your FREE hand soap and $10 credit, your total must come to $20. Free shipping too! (This minimum is for first time only.)
  • When you’re done, click Finish and Pay. Easy peasy.

Here’s an example of what I’d recommend for a first-timer’s basket:

1. Your FREE soap (and get another while you’re at it).
2. All Better Balm because winter dry skin is coming. I’m always searching for great hand cream.
3. Those sponges that make my kids want to wash the dishes.
4. This organic hand sanitizer. Because that other kind is gross.
5. Everyone loves a good, natural body wash.
6. Dish soap that won’t harm your septic system or your hands.
7. Our favorite multi-surface cleaner. The girls spray this everywhere and on everything. It ruins nothing. And my house smells like Basil all the time. Perfect for when we stick the For Sale sign in the yard again.

A lot of you have asked how I get my kids to help with chores. I’ll post about that next week along with a free customizable chore chart, but in the meantime, place your order and get ready for fall housecleaning.

Just don’t welcome any viruses in with your pumpkin spice.