amelia · gus · just write life · motherhood · writing

When Determination Comes at the Pace of a Bear Crawl

IMG_0368They tell me bears are fast. If we see one when we’re hiking, the worst thing we can do is run because they will chase us down and eat us.

Okay, not really, but mauling for sure. Maybe.

My kids participated in a bear crawl this morning because the bear is their school mascot (of course because we live in the mountains) and this fun run raised lots of money for their school. Specifically the teacher’s classroom libraries, which I think should be stocked with Cynthia Rylant and plenty of gorgeous picture books.

(I told this to my youngest’s kindergarten teacher from last  year. I don’t know his first grade teacher well enough yet to go all book bossy on her.)

Thirty-five laps around a “track” made of tiny cones and discarded water cups. I have no idea who long the actual footage was, but I know it took most kids about thirty minutes to complete. I expected my turbo charged little boy to run his heart flat out.

He did. He also made his hair look like this which is why I cannot bring myself to cut it.

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But my third, my youngest daughter, who has given us a history that involves words like atrophy and MRI and oligloconal banding, the girl who wears a brace to walk so she doesn’t get too tired, the child who had a complete meltdown at my kitchen table Monday afternoon BECAUSE THIRD GRADE IS SO HARD, I didn’t have any expectations. I just hoped she wouldn’t get run over.

Y’all.

She ran and ran and grinned and ran and cheered and laughed. She beat her friends. She never stopped, never gave up, never worried that she couldn’t do it. Watching her reminded me she’s stronger everyday. She’s better every scan. She’s living with a new normal that’s been her normal for over half her life now.

This is her life.

And she’s determined to live it at high speed–not crawl through it cowered down by the what-ifs.

I think it’s time I took a cue from my baby girl and found my own endurance.

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I adore this book. It is wonderfully written and tells the story beautifully.-2

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1000 gifts · just write life · madelynne · motherhood · writing

13 Ways to Live When You’re Only 13

Dear Daughter Turning 13 Today,

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Yesterday I couldn’t reach the paper plates on the top shelf of the tall cabinet and you could.

Yesterday you lay in bed with me, snuggled up like you were still five, but we read Harry Potter instead of Llama Llama.

Yesterday, you were still twelve. You were still considered a kid by society and all the people who create children’s menus at restaurants.

Today you are thirteen.

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This getting older is pretty much like standing on that mountaintop again, realizing we still have so far to go. 

Your daddy doesn’t like when I wish it away. This growing up, growing older, growing taller by the second. He loves having you all independent and that I don’t make him carry a diaper bag anymore when we travel.

But when you were small, I could tuck you into my lap and protect you from the world. I could hold you close and make everything okay with a Disney movie and some popcorn on a school night. (I keep trying to use this tactic, hence Gilmore Girls on the first day of new school when you cried because you didn’t have any friends.)

When  you were small, I was all that stood between you and all things scary. Now you’re growing up and you’re the same age as students who once called me Mrs. Brackett and talked me into reading Twilight and told me about which boys were no good. I can’t imagine you being the same age as Ansley or Cassidy or Katie or Maribeth or Mattie or Savannah or Jessica or Veronica. In my mind, you’re still five and you love coloring and mismatched clothes and playing at the house up the hill and when you grow up, you’re going to be President and Jackson is going to be your Vice President.

Now you’re standing in front of a world that when the news or weather channel is on–thank goodness we don’t have cable TV–seems awfully scary. Do I caution you about social media? Cyber bullying? Nuclear missiles? Hurricanes? EMP pulse? ISIS? Zombie apocalypse?

Or do I just teach you how to live in the face of a world we can’t control? 

I think this is a better lesson.

13 Ways to Really Live When You’re Only 13

  1. Sing. Loudly. Off key or on key. Hamilton score or Taylor Swift (the old stuff though). It makes you happy. So do it no matter what anyone else thinks.
  2. Laugh. At yourself and with your friends and always, always with your family. We yell enough. We don’t laugh enough.
  3. Wear the clothes that make you feel good. I wish I’d learned that sooner.
  4. Try harder everyday. Keep practicing volleyball and geometry and music and all the things you like.
  5. Enjoy the sugar now. Though we do talk about healthy choices… I’m so jealous you can drink a Dr. Pepper without an ounce of guilt because you’re young and full of never-ending metabolism.
  6. Be yourself. You’ve never cared what the popular kids thought. Don’t start now.

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    Case in point: sparkly hat.
  7. Keep the compassion. Walk between the crowds, see the ones outside.
  8. Know what you believe. Now’s the time to ask all the questions. To maybe find all the answers. Talk to us now, while we’re closer than a phone call.
  9. Talk as much as you want. I know we joke about how you could talk the wallpaper off the dining room wall (and I really wish you’d try) but I love to listen to you tell me about every detail of your day. Truly, even when you think I’m not listening, I am.
  10. Delight in all the small stuff. You already do–let that be a part of the young woman you become. One who sees how all the little moments really matter.
  11. But let the little hurts go. We talk about this almost everyday. We’re both working on it and I hope you learn faster than me that letting some things roll on off will make you happier.
  12. Like what you like. Music. Books. Clothes. Games. Like the things that make you grin and let others do the same.
  13. Stay honest. You tell me you’re like me–but you’re not. You’re stronger and more confident than I’ve ever been. And you’re honest–with yourself and others. You talk things out. You wrestle your hurts. You ask for help. Because you don’t pretend to be something you’re not.

While I could happily wait a little longer to see you become a young woman… this time keeps coming at us and the days and years seem shorter every time. Settle in, baby girl. We’re going to make it to the other side.

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Madelynne was born so long ago WE DIDN’T USE DIGITAL PHOTOGRAPHY AT HER BIRTH.

 

Thirteen years ago I birthed this baby. Eleven days ago I birthed this book. Let’s just say one took longer than the other and they’ve both caused me immeasurable amounts of tears–and incomprehensible joy.

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.