January 12, 2018

In Their Season

“I wonder if the snow loves the trees and fields, that it kisses them so gently? And then it covers them up snug, you know, with a white quilt; and perhaps it says, ‘Go to sleep, darlings, till the summer comes again.’
― Lewis Carroll, Alice’s Adventures in Wonderland & Through the Looking-Glass

I. Swaddle

It is a sunny afternoon, and for once, my newborn daughter is sleeping soundly, peacefully if not quietly. The wheezing, gurgling sound from where the tissue of her larynx flaps against itself surrounds her perfect, gorgeous face — it says cchchhhh sssccchhhhh ssscccchhhhchhh. But her eyes are closed, and I pass her from friend to friend in my living room, easily, with no drop of her head or arm stuck in someone’s armpit. This invention, I say to myself, is freaking brilliant. I need ten more, just in case. Continue Reading…

December 29, 2017

2017: Counting and Not Counting

In December of 2014, I had my first meeting with Deborah Siegel of Girl Meets Voice, a consulting firm helping women get their thoughts and world-changing ideas out into the world. Deborah looked with bright, interested eyes over the table at me and asked, “what’s your idea? what do you need to say?”

I had walked into that meeting thinking that I knew exactly what I wanted to say, but when she asked me so directly, I wasn’t sure. I stammered out that I wanted parents to feel empowered to push against doctors who weren’t listening. I added that I wanted those parents to feel less alone, that their worries were shared and that they had more in common with each other than their distracted glances in crowded hospital waiting rooms.

“I want to write a book,” I said. Continue Reading…

November 30, 2017

Non-Holiday Holiday Expenses

The holiday season is coming, and I can’t stop thinking about brain surgery.

In July, Vox magazine did an informal assessment of the cost of the blood clot surgery that Senator John McCain underwent. Because he would be the deciding vote in the Senate’s repeal of the Affordable Care Act, the discussion in Vox’s article centered on what that same surgery might cost someone with no health insurance at all. Their best guess, determined based on both public reports on the name of the procedure and Mayo Clinic estimates of their own costs to perform that procedure, was $76,000. It is an impressive cost, and one which would be daunting to anyone, let alone someone struggling financially to the degree that they cannot afford health insurance.

Imagine you have a child who needs that surgery in one of the states where CHIP funding (federal Children’s Health Insurance Program) is about to run out. If the budget passes as currently proposed, the program dies, along with tremendous numbers of tax breaks for middle-income families.

Fast forward to the holidays, and the cost of a procedure like that leaves no money in anyone’s pocket for even a string of blinking holiday lights.

November 10, 2017

Write the Story You Need to Read

“rapid breathing of the newborn”

“morbidity vascular ring repair”

“esophageal dilatation toddler”

“vascular ring story blog happy ending”

“double aortic arch multiple surgeries”

“afraid my child will die”

“misdiagnosis eosinophilic esophagitis”

These are all real search terms I’ve typed into Google in the years since my daughter — now twelve years old and completely healthy — was diagnosed with a Double Aortic Arch just after her first birthday. In the intervening years, I typed those words into a desktop computer while nursing her on a big pillow in my lap or while she played on the floor nearby with her big sister; on a laptop at a coffeeshop while she went to preschool; on my first smartphone while I waited for her to come out of general anesthesia. I’ve been searching for stories like hers since I knew she’d have a story to tell. Continue Reading…

October 20, 2017

Drenched and Beautiful

cloudy

One morning, I went out for a run. I had a busy, chaotic week ahead of me, with puzzles to solve and a full range of emotion to experience, and I wanted to clear my head, to shake out some anxiety, and to take an uninterrupted look at the world around me.

When I looked outside, the ground was wet and the sky was grey. Would it rain? I checked the weather on my phone, and it forecast no rain at all. I left my sunglasses dangling over my back door knob, turned on some music in my headphones, and headed out.

The rain overnight had left everything glistening with droplets of water, and the grey skies made every color seem brighter and more saturated. As I’ve done for the five years I’ve been running, I stopped whenever I saw something particularly beautiful, looked closely, and snapped a photo.

Not two blocks from my house, a father and son living in a row of townhouses have taken over their building’s street-facing garden. The flowers there are spectacular, and careful planning means that new blossoms are always greeting me as the seasons pass. That week, it was their pink hibiscus that was most prominent. I stopped, paused the music in my headphones, and took a photo: