Author Archives: Debi

2017: Counting and Not Counting

swallow-my-sunshine-book

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…

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Latkes Work for Everyone

latkes

Here’s a secret I wish more people knew: latkes are the perfect holiday food.

For those of you not in the know, latkes are the food most commonly associated in this country with the Jewish holiday of Hannukah. Also known as potato pancakes, they are similar in some ways to hash brown potato patties — but tell that to a Jewish family whose grandmother has been making them for half a century, and they will scowl at you. Where hash brown patties are contained, with neat edges and a definable shape, latkes are chaos: vaguely round, perhaps oval, with shredded potatoes crisply sticking out from every edge and caramelized bits of onion stuck to the bottom, depending on the recipe.

The basic recipe for latkes includes varying proportions of shredded potatoes, onion, egg, matzo meal or flour, and salt. The resulting batter is dropped by spoonful into piping hot oil and fried. As a symbol of the miracle of one flask of oil lasting for eight nights in an ancient Jewish temple, the latkes are meaningful. As a food, they’re utterly delicious.

For me, though, another miracle of latkes is that their basic recipe is as versatile as the rituals of the holiday season. If you have family or friends visiting who follow any number of restrictive diets, simple tweaks to the latke recipe make it the perfect food for almost any need. Continue Reading…

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Layover in Holland

layover-in-holland

Within the community of families with special-needs children, there is a well-known poem/essay called “Welcome to Holland.” It became famous in this community because some loved it and felt it really spoke to them, and some found it galling and infuriating. In “Welcome to Holland,” the writer, Emily Perl Kingsley, compares life with children who have special needs to a flight she expected to arrive in Italy, only to touch ground permanently in Holland. The rest of her life is filled with experiencing all the real, tangible beauty of Holland, even as she has to hear all the stories of Italy she will never experience firsthand.

It’s an obvious metaphor, and certainly simplistic, but it’s easy to see the comfort it might provide. Few pregnant mothers dreamily stroke their stomachs and imagine the beauty of the metaphor in which Holland stands for a life of health struggles and emotionally draining paths to seeing one’s child’s basic needs met. However, once they stand in on the tarmac in the strange land they’d never considered, it’s only human to peer into the distance and seek out the tulips. Those tulips are real, at least some of the time. Continue Reading…

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Non-Holiday Holiday Expenses

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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.

Continue Reading…

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Write the Story You Need to Read

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“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…

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