I got the CD-ROMs in the summer, and I opened them in November.
I’d asked the hospital to send me my daughter’s unabridged medical records only when I’d realized that it was as simple as filling in a form and sending a check. I did it before I could chicken out. I did it because I could. I did it because I was starting to jumble the facts in my head, because even though I didn’t want to sue anyone, I wanted those records before they got lost or deprecated, before their systems changed, before the years of my daughter’s misdiagnosis and unnecessary treatments got buried under other things, both in the hospital filing cabinets and in my soul.
When they arrived, I realized that they were not a box of papers, as I’d expected. They were on a handful of CD-ROMS: one for the notes and chart, and five for medical imaging: chest X-rays, CT-scans, EKGs, echocardiograms. I held the imaging CDs in my hands and wondered: was there a video in here of my daughter’s heartbeat? If she’d died, would I have wanted to hear it? Would I have wanted to play it as I fell asleep? Continue Reading…
“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
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…
Between June of 2010 and May of 2011, my daughter Sammi progressed through the six food elimination diet for a rare inflammatory disorder called eosinophilic esophagitis. In an effort to determine which — if any — of the most commonly allergenic foods might be irritating the tissue inside her esophagus, her gastroenterologist asked us to remove dairy, eggs, soy, wheat, and all nuts from her diet, which was already vegetarian. One by one, we added foods back in as endoscopies and biopsies guided us as to the foods that seemed to be safe for her.
On this blog, the most popular post is called Practicalities of the Six Food Elimination Diet. It was my first effort to write the content that I wish I could have read while Sammi was on this diet — a lot of empathy and even more practical, straightforward advice on where to start. So much information on elimination diets online focuses on adults who can, for the most part, understand that what they’re doing is for their own good. Adults can sit in front of uninteresting, repetitive meals for weeks on end and make their peace with it. Children often don’t have that same ability.
As I’ve seen how popular that original post of mine has become, I’ve wanted to add to it, to provide more information to families who are struggling to feed their children with both attention to the restrictions of the diet and with love and compassion. To that end, I wanted to share a typical day for Sammi — who was five years old at the time — when she was on the full elimination. Continue Reading…
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.
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…