What You Brought Home

swallow-my-sunshine-brought-home

Dear Sammi Sunshine,

On the day that we brought you home from the hospital, we were nearly out of the parking garage when I remembered the milk — my milk, your milk, stored in the infant intensive care unit freezer. I’d been waking up every three hours for over a week to pump it and bring it in a little cooler to you each morning. I sprung out of the car, wincing from the cesarean section scar still healing on my abdomen, and went back into the hospital for it. It was the first thing you brought into our home — you, your tiny perfect self, and twenty-six ounces of expressed breast milk. Continue Reading…

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My Daughter Is Twelve and Four

swallow-my-sunshine-yellow-bowl

Earlier this month, my twelve year old daughter Sammi mused to me, as she rummaged through the refrigerator for a snack, that she was hungry all the time these days.

“I feel like I just always want something to eat!” she told me as she scooped refried beans into a bowl at the counter.

“That’s pretty normal for a kid your age,” I reminded her. “You’re doing your last big growth spurt right now.”

“Yeah,” she answered, sprinkling shredded cheese on her bowl of beans and sliding it into the microwave, “but this is crazy. By seventh period every day, I’m already trying to think about what’s left in my lunchbox to eat on the walk home! I just chew gum and try to make it for three more classes.”

I made some suggestions about keeping a small snack in her bag to nibble between classes, and she brought her bowl of beans and cheese to the counter to eat as she got started on homework.

Four years ago, I would not have recognized one thing from this scene: not her independence, not her strong shoulders or her thick hair, not my casual tone, and, most of all, not the fact that my daughter was making the equivalent of a full meal as an after-school snack.

Four years ago, a bowl of refried beans and cheese would have come home from school with her in a thermos, missing a few spoonfuls, and be dumped in the trash by dinner time when she still hadn’t finished it.

Four years ago, my relationship with Sammi was almost entirely composed of my trying gently to encourage her to eat, my trying not-so-gently to encourage her to eat, and my internal monologue that blamed everything that went wrong with her temperament to my failure to find exactly the right things for her to eat.

Four years ago, I didn’t really know my daughter at all. 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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