So, I've been getting a lot of lovely, kind, encouraging messages that read something along the lines of, "So glad Amelie is doing better!" "Grateful Amelie is recovering!" and a several questions like, "so, Amelie is all good, right?"
I think there may be some confusion or lack of info (prob my fault) about the reality of Amelie's diagnosis. To be honest, I don't really want to write this post. But I don't want people to be confused or in the dark about what's going on with her.
UGH, here I go....
Here's the deal: Official diagnosis by her neurology team is laminary necrosis of her brain. Save me the emotional effort of explaining this medically and just Google it please.
Status: It's progressive. Which means, it's terminal. I have never written that word until now. I rarely speak that word at all. But there it is. No she's likely NOT going to "just be ok". BUT, we believe in miracles and we believe in the power of inexplicable things, of phenomenal and miraculous healing. It happens every day. I come from a family of doctors, ok, I am pragmatic. I understand how the world works. I ain't no fool. As my buddy McGee says, "I know a thing or two, about a thing or two." I understand the limitations of medicine. Yet, I also fully believe in the illimitable power of prayer. When faced with the impossible odds the cancer diagnosis brought, my sister once said, "well, why not Amelie? People do survive this, so why not her?" That is a phrase I say to myself DAILY. Sometimes, hourly. Miracles happen! Why not to Amelie? Ask and you shall receive. We must ask for them.
To be clear, Amelie's doctor, when asked how long we have with her, told us he has NO IDEA and can't even make a guess. It's not cancer that's causing this. If it were, it would show up on imaging quite clearly, for, as he stated, when Pineoblastoma comes back in the brain it "looks like a shit show." Her brain looks great, except for the necrosis. It's remarkable really. But, when pressed, b/c let's be real, yall know I had to probe and push the Docs into giving me some sort of answer, Dr Crawford said: six months. That was in January. That means June.
It's a totally fucking confusing way to live--I know our story is not unique, our pain not exclusive or singular or not without equal--but holy shit I have no idea how to live some days. I don't mean that in a morose 'i want to die' way. I mean, how do I LIVE? Do I laugh, go out to dinner, run errands while my darling beloved lies at home with a nurse? Do I make plans for the summer? Do I go on a trip? Do I send Bravery to my parents or my sister's house on break? Do I curse God or thank Him? It seems SO OBVIOUS from where you're sitting, outside of this fish bowl, but I guarantee, it's not that clear in the trenches. Every day is so confusing. Some days are just like this intense spiritual battle that rages on silently, sucking the pranyama (life force) right out of us, and turning us on each other in nasty ways....and some days are amazingly loving, where, as a tight family unit, we're happy, whole (as whole as we can be), grateful. Then other days it's like we're just sitting around, waiting for her to die. Then the next day she's doing great and we're back at finding ways to laugh again. it's exhausting.
"Day by day" is what everyone says to me...b/c that's the only answer that's possible. and that's what we do, we live day by day. we LOVE her day by day. and we beg God for mercy and healing, day by day.
That's why I created this darn blog. I don't want to just showcase my life to the world for attention. Nay, I say. I want people to KNOW about sweet Amelie, her story, and thus be INSPIRED not only to pray for her, but to go about daily life with a sense of HOPE and fuckin JOY man. like, a happiness that's NOT based on circumstances. That's the nirvana we're all lookin for and some days I think Amelie is the gatekeeper. Other days, I just want my daughter back so badly I can barely breathe.
But then I hear her. I hear her little moans, calling us from her room and I am called to action. As long as I can be her mama, to serve her, to fight for her, and to love her, I have a purpose. "You take good care of me, Mommy" she used to say.
So as June approaches, this fear, gently, lightly, softly boiling somewhere below, starts to rise to the surface. Wounds that were healed from the past start to re-open, bitterness creeps in, self-pity, which is a DANGEROUS thing in my opinion, starts to spread like an infection of the heart. It takes so MUCH work to not FIGHT that, but rather, just SIT in it. not wallow or welter in it, but just swaying with it, like letting a powerful wind move you along the ocean, instead of pointlessly fighting a rip current.
So ok I went off on a tangent, but that's the real deal. And as I write this, I hear her waking up (10:10pm, my night shift begins) and I am once again called to action, Mommy action!