As I do, was reading updates in the Trisomy/T18 support group I follow. I see different things… A family trying to get home because a hospital deems a heart cannot be repaired, or another Trisomy Warrior has passed, or the great god Insurance has yet again denied a prudent treatment that would vastly improve quality of life or provide years of living because the diagnosis looks scary.
Those mothers don’t give up. Rather than accept nonrepair or initially (or purposely) presented dead ends, they do as I and so many other families would and reorganize the care their babies are getting so they have the meds needed to live with the issues they have. Or if passed, they look for comfort in the storm.
Ultimately, it’s not cruel to attempt all measures to extend life. And I’m not trying to make a life/choice argument over it. But if Aubby had had the journey That baby or That baby or That baby has had so far, and not exactly the journey she’s had, I’d have done no different.
Families try. To go home, to find second opinions, to appeal, to find a sliver of light in the darkness of potentially preventable premature loss… but complex critical care and too-small hopes of doctors unversed in T18 care keep insurance from helping those families, and a trisomy baby may, as one mother put it, need to “live the rest of days” in that care. Hours or states away from where families call “home”, or due to denial of coverage for a procedure. That breaks my heart for them.
I look at the pictures other trisomy families share of their little ones. I study even harder the faces of those I feel could have avoided the fates they already met… I often feel they could’ve had better outcomes if, if, if. And I remember how I used to feel sick to my stomach at the thought of losing Aubby to inevitable, congenital… happenstance. And how many other mothers are far more likely to, and many perhaps far sooner. Or maybe they won’t, who could say, when I was told Aubby had no chance but thrives with us, even imperfectly, today?
I’d forgotten that sick feeling in my stomach. That… hopelessness. That exists even as hope and love and a kind of gentle peaceful ecstasy also exists. That… place. Where you, as a parent, may wait for your child to die. For that small person, literally made from your blood and bone and essence and personality and uttermost being. To run out. And I can’t bring myself to say… how.
But to think of my child, other families’ poor children, in that way… that place… makes me feel sick in my throat.
I cannot thank my stars… enough. For me to get so far with Aubby’s health is a miracle. She is a miracle, and I am grateful. There was a certain relaxation I’d reached with her. Finally unafraid to sleep while she sleeps. Finally unafraid she can breathe without me watching, even as my breath catches in me every morning when I check on her. Just in case, always, I watch over her.
Then I had my son who has typical chromosomes. And seeing those little babies, and their families, I realized I’d formed another protective wall. Unlike my daughter, my son wasn’t born with an expiration date. Like some carton of milk come from that old NICU nightmare.
I feel guilty for that. That nothing is certain, ever, ever. That a chromosomal difference can create such a rift in medical care, and even in what it means to be a parent when it’s something between caretaking… and unconditional acceptance that some medical providers cannot fathom… anyway.
In any case, realizing I hadn’t felt that sick feeling– in a while, anyway, as it had risen again back in September 2018 when her birth hospital nearly cost our family her health for want of a wheelchair while they wasted minutes of her life waiting on “transport” to take us three floors down in the building– made me feel grateful. The same grateful that I am every morning that I see my daughter’s soft breathing, her long little fingers curled by her chin after pulling her own blankie close.
Grateful. Breaks me. It’s why I’m so under-motivated in other ways since the NICU days holding vigil at Aubby’s bedside. Very little measures up to her surviving every day. It’s like my soul still holds its breath. Just in case.
And that’s how medical mommas and daddies… change. We change. We become whole new people, but whether we’ve tarnished or been burnished by what we must aspire to overcome remains a mystery of its own. And that’s something to be grateful for too. Because our spirits could collapse under the weight of crisis, or later… under the weight of burnout, and becoming too weary, and witnessing the ends of the fights others have endured. But suddenly you’re no longer side-by-side of them as they enter the next phase of being.
So. Please, appreciate your breath. Appreciate your children and loved ones. And appreciate whatever else makes your life… livable.