Every post I’ve written since this one is about more than whatever I’m writing about: it’s about coming to terms with the recent news we’ve had about Avery’s heart.
All the comfort food (the gravy-soaked chicken, the soup, my return to baking cinnamon rolls, which I’ve associated with grief/comfort ever since reading Raymond Carver’s “A Small, Good Thing” ). The thinking about Down syndrome, and advocacy, and how hard this road can be, but how beautiful, too. The tender memories of Avery as a baby, and particularly the phone call from the heart specialist.
It’s ironic that all of this began right around Valentine’s Day, when I saw hearts everywhere, hearts of love, hearts of hope, Avery’s heart on the ultrasound machine. And now, it’s come to this. After two echocardiograms and an electrocardiogram, it’s clear: Avery needs open heart surgery in Seattle.
What has happened is similar to an Atrial Septal Defect, which is a hole in the septum that separates the upper two chambers of the heart. Avery’s is a weak spot that balloons out like a wind sock (the doctor’s term, which I found particularly descriptive). It needs a surgical repair.
So many things about this Dx are similar to five years ago: our shock, our feeling of being completely blindsided. Our fear, our worry. But even more so, now, is the feeling of sorrow. I wish this wasn’t happening to Avery.
Avery is the kind of kid who, when he’s in for his blood draws, will shed one giant tear, then reach out and hug the technician, because he sees how bad they’re feeling, too. He’s the kind of kid who gets a standing ovation after his well-check appointments, because he’s been so sweet and good and polite. He’s the kind of kid who makes people feel lucky, even when they’re having a bad day, which is a little bit heartbreaking, that he’s the one that has to face such a big hurt.
Tom and I are handling it each in our own ways. I’m baking up a storm, and hugging all my kids a little too tightly, and every once in a while I find myself in front of the fridge eating peanut butter straight from the jar.
Tom has decided to repaint the whole house, which I take for his need to fix things, to make things right, only in this case, there isn’t much we can do, other than wait for the surgery date. So he’s painting again, just like six years ago, and I half-jokingly asked, “What should I write on the walls, this time?” His answer, “Let up.”
I thought about what I would write, now, six years older, six years wiser. I thought about the words “strength,” or “good health” or even, “help us.” But in the end, I wrote just one word, very tiny, almost tentatively. It was the only word that fit, the only one I know I will never regret. I wrote the word love.
Some things are very different about this time: Seattle Children’s Hospital seems to be a dream hospital, a place I’d swear was designed by a group of really smart, very caring parents, as if their own children would be staying there. I’ve already learned so many lessons as Avery’s mom–how to seek out good care, how to speak up for my child, how to ask for help.
And I’m asking for your help, now. Please send your prayers and healing wishes. Please share your experiences, if you have any knowledge about heart surgery. And please keep a good though for us on March 11, which is the actual day of the surgery.
From my heart to yours, thank you.