This Is Not Normal

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Yesterday, my daughter Sammi went under general anesthesia for the nineteenth time.

The surgery was minor compared to some of the others she’s faced, and I wasn’t worried about it going poorly, but the moment I stepped off the elevator into the hospital corridor leading to the Pediatrics ward, I felt something in the air settle on me and seep in. It was familiar, heavy and soft and warm. It had a smell — cleansers covering up disease — and a visible quality like steam just moments before it evaporates completely. I walked through yellowish, dim light, floors and walls an indeterminate shade of grey or green or beige. There’s a haze to the air, and a weight. I felt something gently pushing on the top of my head and my shoulders. Gravity is more powerful on a hospital ward.

I’d forgotten that. Continue Reading…

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There Was Joy

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There are so many things I had to refuse her.

I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.

Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window a mystery.

The winter turned into years, isolated and treading water. Continue Reading…

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10 Foods That Saved My Soul

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In 2010, my youngest daughter, Sammi, was diagnosed with a disease called eosinophilic esophagitis. Though it turned out that this diagnosis was incorrect, we didn’t learn that for three more years. During the first year of her diagnosis, we had to eliminate dairy, soy, eggs, nuts, and wheat from her already-vegetarian diet. During that time, these ten foods became the most important staples in my kitchen, making me grateful beyond anything I had ever known before. If you or someone you love is following the “six food elimination diet,”  these foods might be just the things you need, too. Continue Reading…

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Daughter, Whole

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Several weeks ago, my triumphant, thriving, sensitive and sweet daughter Sammi read from the Torah for the first time.

In the Jewish ceremony known colloquially as a “Bat Mitzvah,” my daughter consciously took her place in her community by chanting three verses of a chapter from Leviticus. Like all children who become a Bat or Bar Mitzvah (literally, a daughter or son of the covenant), she studied for months to learn the melody and the Hebrew words she’d be chanting and all the prayers she’d need to know to share leadership of the service and analyze the chapter of Torah in English. She has a lovely, clear voice, and she spent weeks with headphones on listening to the sound of her tutor’s voice chanting her verses, and singing along. I’d heard her practicing, but nothing really prepared me for the feeling I would have on the day she became a Bat Mitzvah, as I stood next to her at the podium as she chanted in front of the congregation of our synagogue and all of the friends and family who gathered to bear witness. It was not what I expected. Continue Reading…

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What You Brought Home

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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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