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.