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.

amelia · gus · motherhood

When the Unknown Looks Like Potty Training

Our little two and a half year old tornado of a boy pulled a package of underwear out of his drawer last week and demanded to wear it. I figured why not? His sisters were all this age when they learned the fine art of using the potty for more than a step stool.

Yet again, our household learns how boys are different from girls.

First, his sisters are appalled by little boy underwear. There’s a pocket! Whatever is that for? He’s a BOY–enough said.

Then, we learn that although Gus Monster is very into his new drawers, he’s not really into his signals yet. Eight pairs and a bath later, I called it quits for the day. Should’ve done this in the fall when he was actually going on occasion. But, silly me. I thought he was too young to be pushed.

Just a reminder that having four kids only makes one an expert on the mistakes of motherhood.

I have no idea when this is going to work. Eventually, I’m sure. But if he’ll be fully functional in the bathroom prior to the need for a new living room rug, well, that’s questionable. We’re living in the unknown–the time when all you can see is a small light at the end of the tunnel and you just plug forward everyday in hopes that it grows brighter.

I’m not just talking about potty training.

I curled up in the corner of our lumpy sofa on Friday morning with my devotion and the scary canyon of what ifs for Amelia looming on my horizon. We saw her neurologist on Thursday and our future right now is certain to hold more doctor visits, more tests, more therapies as we try to uncover what caused her brain to inflame itself. What caused her body to demyelinate and send us searching for answers.

So far, no doctor is really pleased with what they can tell us. We’ve had three different prognosis ranging from super scary surgical to expect full recovery. Right now, it’s Clinically Isolated Syndrome. It might go away, her body may heal itself.

It might not.

No one is sure. Doctors for all their fancy degrees and clinical knowledge and case studies–they’re just practicing medicine as my friend said yesterday.

They are learning and we are learning and the unknown can be frightening. That canyon will swallow me whole if I let it.

Rehearsing your troubles results in experiencing them many times, whereas you are only meant to go through them when they actually occur. 
~Sarah Young, Jesus Calling

Have I not commanded you? Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go.
There’s a bridge over that canyon of the unknown. I can’t see it when I’m pondering all the ways I’m going to slip and fall and have to claw my way back up rock walls. We want to live these lives that are all planned out and shiny with promise, but the truth is we live everyday in a dark unknown that’s only pushed back when we focus on the Light–on the good, the beauty, the reasons to be thankful in the midst of fear. 
The blessings of superhero underwear and friends who make homemade blueberry pie and sick little girls who giggle incessantly. These are the images I want to rehearse in my mind when I worry–these are the moments I want to live through again and again.
Not the fear. Not the frustration. Not the many times I’ve cleaned the floor.
But the many times I’ve lived in the beautiful, known moment at hand.
amelia · Christmas · giveaways

"God Bless Our Christmas": A Giveaway for the Day Your Child Gets a Diagnosis

My sweet friend Hannah who ate chocolate chips out of the bag with me on the last night of the Blue Ridge Mountain Christian Writer’s Conference and won the award for best blog is an actual real book-on-the-shelf writer.

She wrote this sweet story and its accompaniments: God Bless Our Easter and God Bless You and Good Night. Beautiful board books for familes, not just children. She used vivid words and a soothing rhythm to remind us in God Bless Our Christmas who is the reason we have all these blessings to enjoy.

“The Christmas carols that we sing
Are full of joy and love.
I have such cheer this time of year.
It comes from God above.”
–except from God Bless Our Christmas

I cuddled up on the couch last week to read this with Amelia, my four year old, and her best friend Ellie. They took a break from the ponies in the dollhouse to tuck into each of my sides and hear the words. Amelia liked the penguins best. Ellie liked the polar bears. I liked the simplicity that so often gets overlooked in our busy holiday.

But most of all I liked having a normal moment with my baby girl. Normalcy has become a thing of the recent past for us in the last few days. I suppose that’s common–because when you get news that’s hard and uncertain, a new normal develops. 
When I wrote these words to those who bear sadness this Christmas, I didn’t know how true they would become for me–
Let this season of love put you back together again.

In the midst of uncertainty and fear, we are welcoming the arms of love that have wrapped tight around our family during these last few days.

Last week, I took my four year old for a stat CT scan and prayed only for an answer to why she had stopped using her right hand and begun stuttering and being clumsy. The test revealed that Amelia has an arteriovenous malformation (AVM).  It’s a scary moment to realize your mother’s intuition is right. That, yes, there is something very wrong and it might get worse before it gets better.

But here’s the truth of our diagnosis. She will get better. This is a treatable condition that we still don’t know about completely and there’s still more testing to be done. But she will get better. Even if that better means a surgery or a drug regiment or who knows what. They tell us we’re the best case diagnosis for something being wrong in her brain.

And I’m scared out of my mind that it will be nothing or something or anything. I’m scared I won’t be strong enough for her, for my husband, for my other girls. I’m scared I’ll run out of energy to give.

But I don’t have to have enough of me to go around. I have a great big God who formed her and knows her and formed me and knows me. He knows what we need and what we can handle. He’s given us a network of friends and family who are already begging for jobs to do, already bringing meals, already replacing my favorite lost pair of earrings.

God Bless Our Christmas indeed.

So today I’d like to spread a little Christmas love. I’m giving away one copy of God Bless Our Christmas. Winner will be chosen at random from comments left on the blog. You can comment on Facebook too, if you like, but I won’t pool entries from there. One location is all I can handle.

Tell me whose Christmas would you like to bless?

amelia · giveaways · motherhood

What She’s Taught Me In Four Sweet Years {and another birthday giveaway!}

She’s four today.  It’s really hard to believe. She wasn’t sure after so many days of counting down if today was really it. But it is. Today she’s four and in four sweet years she’s taught me how to live better.

She’s taught me that it’s okay to wear whatever I want, or rather, to let her wear whatever she wants because in the grand scheme of motherhood, arguing about matching is not always worth my energy.

She’s taught me to use my attributes and work my assets the way she works her really great hair.

She’s taught me to love fiercely with no idea that a hug could ever be too tight.

She’s taught me to laugh all the time, to rediscover my imagination and to find silliness in everyday.

She’s taught me to color to my own beat even though, at four, she’s stopped humming while she draws.  It makes me sad.  I miss the nonsensical tunes that used to accompany the dramatic shading of Winnie the Pooh.

She’s taught me not to boss my friends because it’s not nice and they won’t want to play with you.

In four years time, she’s made me a better mother and she’s let me try and fail to parent her with what worked before when the sisters were passing through the same stages.  She’s let me learn over and over that every child is unique and perfect in their own quirky way.

She’s made me a writer.  It was in the days before and the many days after she came that I waded my way into the blogging world.  It’s often because of her, and the lessons I’m learning, that I stay.