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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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.

 

 

amelia · faith · just write life · motherhood · writing

What It Means for Me to Live Prayer

IMG_6043In February, when I attended FCWC (which is really more retreat than conference and I recommend it wholeheartedly for introverted writers and harried moms who want to be writers), Robert Benson was the keynote speaker. I wrote a little about some things Robert had to say about hurry and life and living within the steps of the Ancient Dance.

Robert will tell you he is a little man but God is great. He’ll also tell you the Yankees are the only baseball team worth watching and if you dress like an artist people will believe you actually are one. Because of my proximity to the staff at conference, I got to spend a little extra time with him, and because I have a habit of putting my foot in my mouth, we had a good laugh together. We wound up in the same shuttle on the way back to the airport–over an hour of him and Eddie Jones (who is my publisher) talking church and baseball and publishing’s state of affairs.

One of those divine moments you have to watch out for at conferences where everyone believes God will place you where He wants you. God placed me where I could listen.

Robert has written a lot of books about life and Christianity but not about Christian living in the self-help sense of the genre. Don’t expect a how-to list and questions to work through and a Facebook chat group.

I purchased Living Prayer because I’ve been in a season of life in which I wrestle with prayer. Not just the action of it–what it means to pray ceaselessly or in communion–but what it means to pray and ask and receive.

Or to not.

IMG_2246I wonder over and over when we pray for healing and restoration and then say God is good when we receive those things if we could have received them without the prayer? And when we don’t, we say that is His will, so if His plan is unchanging, what is our purpose in prayer? What is the point?

Prayer, for me, has not been a rhythm, a stepping to a cadence my soul already knows. Rather it has been a beating and a brush-off. A way people had of offering comfort when what I really wanted was someone to rail with me, to hold me while I wept, to tell me that I am out of tune with God’s rhythm because prayer is not about what I can get but what I can receive.

Prayer is not meant to be the catch-all we so often make it.

People tell me God is so good when I answer their questions about my daughter’s health. I nod. God is good.

But my daughter is not healed.

She may never be, and that is our reality.

She compensates well and we move through our days and maybe I might call her physical therapist because her hip drop is back and her leg is very stiff and she cried the other night because her knee hurt. If her next MRI shows her lesion has receded, I’ll be surprised. If it shows a new spot of deterioration, we’ll still go through our every day and maybe see her neurologist an extra time or two.

And the only prayer I have is that God will show us how to live though our days.

I no longer offer petitions for her body or mine. I offer praise for every day that is better, for every moment that we are broken, for every set of hands that folds with mine. Then i get really quiet because Robert says we cannot hear God’s voice when we are too full of our own. 

And “it is our brokenness… that holds the key to whatever we have to share.”

There is a chapter in this book about Walking in the Dark. If you’ve never walked that path, perhaps you cannot yet understand. But if you have…

“Perhaps God needs me to pray so I can be about the business of laying myself and the people and places and things I care about on the altar.”

And that simple act is what I am learning prayer is. A laying down. A lifting up. A coming to the altar.

I’d love to have you join me there.

For more about what I’m reading, writing, and listening to these days subscribe to my monthly-ish newsletter.

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 · motherhood · Uncategorized

Looking Back and Moving Forward

Found this sitting in my drafts folder from almost exactly a year ago.

When our diagnosis was still AVM, when we were still being told surgery would be an “easy fix” (don’t you just love doctors’ optimism?!?) and had no idea that one year later, our daughter would still struggle.IMG_3481

There are good days and bad days and in-between days. Sometimes I still sit in the school parking lot and cry. But this line breaks my heart when I read back over and remember our darkest moments of this time: I can’t suit up for this fight with everyone watching. I think the biggest lie I bought during that time was the idea that I had to be strong. Instead my kids have learned more about trusting God from my inept brokenness than I ever could have taught them by faking my way through the fear.

Yesterday started with Amelia refusing to wear shoes to school. We’re in the parking lot of her tiny little Christian school at a tiny little church in the middle of the country with the mountains all around and I’m throwing her backpack and saying, “Well, fine, then. Stay home. I don’t care.”

Except I really, really did.

I don’t know how to walk this line. How to parent her through this time in our lives without caving to every little whim (she ate gummies for breakfast by the way). I don’t know how to discipline my child with the “slightly bleeding arterial abnormality” in her brain. I don’t want to yell, but I still need to be the mama. I don’t want to be selfish, but I still need a little bit of time for myself. I can’t suit up for this fight with everyone watching.

She didn’t go to school. Of course it was my one four hour block in the week where everyone goes to school and I keep “office hours” with the free wi-fi in Chic-fil-a and try to write. But another mama came to my rescue. Hers weren’t going either. They all played hooky at her house and ate funnel cakes at 10:30 a.m.

Don’t judge us. Sometimes everyone just needs a little break.

{Maybe I should insert here that our Sunday School Christmas party was the night before and it was at least 10 p.m. before anyone went to bed. Sort of explains the morning meltdowns.}

But when that break is over, reality is still there. My big girls are still in need of attention, the dishes still have to be done, and we’ve got a plumber bill coming to go with the new pipes in the bathroom.

And then apparently I ran out of steam…

What moments from this past year are you dwelling on as Christmas draws near?

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.

amelia · Friends

When God Gives More Than You Can Handle

Things have been quiet here in this space, and I really needed it. Needed to step back and not spew out words and frustration that would do no one any good. Instead, I just had some good old-fashioned temper tantrums with my real life people.

And I made pizza and filled our house with friends and took a real position with a real publisher as a real associate editor. You know sometimes in this hard knock life, distractions are exactly what I need.

(Yeah, we’ve seen Annie a half-dozen times. Also, the new Cinderella and Home. I haven’t been to the movies so much since college.)

We’ve made some changes to our little home and are settling in to be here longer than we ever wanted, but Joshua’s got the garden plot ready to grow salsa and Gus is finally big enough to drive that hand-me-down Jeep all over the tracks in the yard his sisters originally created with the Barbie version, so we’re good.

Annabelle was baptized and Easter came and we can finally get outside in the sunshine.

Yes, that’s a Minnie Mouse balloon. You don’t keep balloons in your trees?
Yes, his mouth is blue. I think there was a ring pop involved.

We’re still living in a state of unknown, but we’re good. Well, sometimes.  Sometimes I just want to forget doctor appointments and physical therapy and that I’ll have to write a 504 plan if she goes to kindergarten. Sometimes I just want to drop everything and go to the beach.

She does too. She draws pictures of the Pink House and begs to go there where the sun is warm and the sand is cool and the peace that passes understanding blows in on a breeze across the sea.

I posted on Facebook a couple weeks ago that sometimes I have to pull a Katniss and recite what I know to be true:

Amelia has a brain lesion.
This lesion causes her right side to be weaker than her left.
It affects her gait and her grip.
It tightens her muscles and turns her foot inward.
It makes her tired and irritable and turns her into not my kid.
It’s not bigger.
It’s not smaller.
She has other autoimmune indicators that could lead to an MS diagnosis someday.
But right now, she’s still technically living through one episode.
There are good days. There are bad days.
It’s not a tumor….or lupus or lyme disease or genetic or a host of other disorders that have been ruled out with vial after vial of blood and scan after scan of her brain.

It’s a lot to handle, mostly because we just don’t know. I’m in a place where any diagnosis sounds plausible and fixable and better than “we’ll just have to wait and see.”

Everyone likes to say God doesn’t give you more than you can handle. But I read a piece last week that counteracted that statement in words that resonated: Of course God allows me more than I can handle. Because if He didn’t, I (we) would never have a need for Him.

We’re not long for this world of despair.

But this world is where we are and along the journey, He does give us miracles calling themselves friends. I just finished Anne Lamott’s essay collection, Small Victories: Spotting Improbable Moments of Grace.

(Side note: I love Anne Lamott. She’s honest and witty and irreverent and loves Jesus all at the same time. Sometimes I need a little left perspective.)

Anyway, she wrote a piece called Barn Raising about how her neighborhood circled the wagons and raised the metaphorical barn of shelter around a family when their young daughter was diagnosed with CF. I cried.

Y’all built us a barn, too. It’s a shelter from the fear and anxiety. It’s a place where Amelia is just a daughter, sister, friend and we are loved and comforted. It’s a place where she can jump on the trampoline with her friends and their moms can remind me to care for myself. It’s a place where dinner is on a gift card and gas for appointments is already paid for and Gus is always welcome to play.

It’s a place of prayer and a place of peace.

Thank you for loving us through this. Our barn door is always open for anyone who needs shelter from the storm. We’ll hug your neck and tell you we understand and in the fortunate-unfortunate dance of life, we will really mean it.