Ten Gifts I Didn’t Deserve

grateful-sun-flowers

In the years I’ve spent as a parent, I’ve been humbled hundreds of times. Sometimes one of my daughters has a proclivity the other lacks. Other times, the health challenges of one make me see the relative good health of the other as anything but a given. Most often, though, I am humbled by the ways I see the challenges of other children and families. The things I took for granted always, always, reveal themselves to be as symptoms of my own ignorance. I could make the list below almost endless, pages and pages of gifts that no one is guaranteed but that I — somehow, luckily — was given. I will never take them for granted again. Never. Continue Reading…

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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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