Passover in the Children’s Hospital

soup-veggiesTonight is the first night of Passover, and I woke up early to chop carrots and celery and onions and garlic, the four-musketeers of my favorite parts of the traditional festive meal we’ll have tonight. As I type, I can smell the matzo-ball-soup cooking, the potatoes I added thickening the broth, the dill adding the freshness of spring. I don’t have much time to plan the seder itself, a religious service observed at my second favorite chapel in the world: my dining room table, second only to my kitchen.

I appreciate this day more now than when I was younger, possibly because I spent one terrible, heavy Passover in the hospital with my youngest daughter as she recovered from heart surgery. I think of it now, every year, as I chop and season and clean and prepare for the sometimes 28, sometimes 15 people who come to my house to share the meal with us.

That year, it was just me and Sammi: me in an armchair and her in her tipped-up hospital bed, eating matzo with jam and fat-free cheese and watching The Prince of Egypt on Netflix. It was beautiful, and it was terrible, and while I’m glad we did it, I never want to do it again. Continue Reading…

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What I Was (Not) Thinking

In the fall of 2010, my younger daughter began kindergarten on a dairy-free, egg-free, soy-free, wheat-free, nut-free, vegetarian diet.

In late October, she got to add eggs back into her diet on a trial basis, and I learned how incredibly, incredibly useful eggs can be in managing a diet as challenging as hers. When we added back eggs, it made it possible for us to make these ridiculous — and I mean ridiculous — “pizzas:”

everything-free-pizza

Continue Reading…

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Twelve Years in Music

music-tools

I’ve loved music since I was a very little girl. My parents owned a record store before I was born; their music collection was spectacular, including every emblematic song of the 60s with rare gems thrown in. My earliest memories of their records are of the Beatles’ “All Together Now,” with its b-side of “Hey Bulldog,” a song so dark that it scared me. I can picture the green apple on the record label. I can picture the carpeted floor beneath me. I can remember the spot between the couch and the record cabinet where I sat and carefully edged the records out of their sleeves.

Like most people, my most powerful musical memories take me right back into the moment, bringing with them the smells and images and sensations that were present when the memories embedded themselves. In his fascinating book about music and the brain, the late neuroscientist Oliver Sachs wrote, “Music, uniquely among the arts, is both completely abstract and profoundly emotional. It has no power to represent anything particular or external, but it has a unique power to express inner states or feelings. Music can pierce the heart directly; it needs no mediation.”

These ten songs represent powerful piercings of my heart over the last twelve years of parenting my daughter Sammi, which was — as mothers of medically complicated children know — a more physical, spiritual, and emotional journey than the one I’ve shared with my older daughter. Of course there is powerful music to remember with her, too, but this music below served as survival tools in unique ways for Sammi and I. Perhaps these tools will help others, as well. Continue Reading…

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On Raising Bodies

When my first daughter was brought to me, pink and hot and smelling like something elemental and metallic, I could hardly believe how thrilled I was to see that she was a girl. It turned out that I’d wanted a girl more than I’d been willing to say. I loved everything about it: choosing her name, buying her cute clothes, and saying the word “daughter.” I assume I would have felt the same way about a boy, once I saw him, but I never got that chance. I have two daughters, defying my pregnant instincts and imagination both times.

The truth was that I was afraid of one monumental thing when it came to parenting daughters: screwing up their relationship with food. Continue Reading…

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One Day on the Six Food Elimination Diet

one-day-sfed-swallow-my-sunshine

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…

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