Unexpected Miracles in Unpleasant Places

gfchallahA through line — sometimes faint, and mostly cultural — in my journey of being a wife and mother has always been my identity as a Jewish woman. Like so many people in my generation, I was dropped unceremoniously at the door of the religious school three days a week, twice for Hebrew lessons that were little more than decoding an unfamiliar alphabet, and once for the study of Jewish laws and history. I sat through many Friday night Sabbath services enthralled with the voices of our choir and of our cantor, a deep bass whose lowest notes made me imagine the voice of G-d. I went to three days of services on the High Holy Days, had a Bat Mitzvah in which I chanted a Haftorah portion that I’d never seen translated into English. I knew which foods went with which holidays: challah with the sabbath, apples and honey and mandelbrot with Rosh Hashanah, matzo ball soup with Passover.

It was all a ritual and surface-level observance. What held me to it was my mother and father, and their parents, and the parents before them, the long tail of history and the other-ness that held us together. “In the end,” I was told over and over, “you’ll be seen as a Jew no matter what you do.” Of course, that was a reaction to the recent history of the Holocaust, but I took it at face value, as least as it applied to the wider world’s opinion.

As a young adult, I fell in love with and married a Jewish man whose connection to Judaism had been stronger than mine, but brutally interrupted when his father died far too young and far too suddenly. He believed in having a Jewish home, but neither of us paid particular attention to the particulars of that. Before we had children, it was still the faith of our parents.

Becoming a mother forced me to decide how to reconnect to this faith in a way that would mean more to my children than whatever the Hebrew lessons and matzo balls had come to mean to me. Rather than a religion of their parents, I wanted my children to see themselves as Jews of whatever type moved them.

And then Sammi, my younger daughter, was born with a host of medical issues that took years to unravel. For many holidays during the years when her health changed our entire family’s diet, the connection of faith and ritual to food became tenuous. How do we define the sabbath without a challah? For that matter, how do we define a challah? According to Jewish law, a challah to be used for religious purposes has to be made of wheat, barley, spelt, oat or rye. What, then, of my gluten-free challah during Sammi’s six-food-elimination diet?

Was that challah Jewish? As I grappled with why this was the path my little girl’s health had taken, was I more than a mother pantomiming faith for her children? Continue Reading…

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Somehow They Grow

grownI took my younger daughter, Sammi, to the pediatrician’s office today for some routine vaccines. While we waited for her turn, I noticed a woman across from me with a preschool aged daughter, sitting in front of an infant carseat. The baby in the carseat began fussing, and the woman said — tenderly — “Oh sweetie, you’re fussing already? You haven’t even had your shots yet.” Then she reached down and lifted a bundle of pink into her lap.

Remembering those early days, I smiled at her and said, “If you need a hand, I’m happy to hold her for you. It’s been a long time since I had to bounce a fussing baby. I’m not tired of it anymore.”

She smiled back and said, “Really? If you don’t mind…”

“Not at all!,” I interrupted, making my way across the room to her.

She continued, “…you could take him. He’s starting to squeak too.”

That was the first I had noticed the second infant car seat. A delicious baby boy smiled at me from within it. I unfastened the distantly-familiar shoulder straps, pressed the button to release the buckle, and slid one hand each under his round head and his diapered bottom. He gurgled at me, and I sat him in my lap facing his mother, my arm across his bared stomach.

When the mother was called by the nurse, I carried my new little baby-friend back to the exam room, nestling him in his car seat and waving goodbye. Then I returned to my nearly-eleven-year old, who just this morning had looked like a little girl next to her teenaged sister, and now suddenly looked like what she was: a preteen, just a hint of changing skin and growing limbs and, indeed, puberty easing its way across her path.

“Mommy?” she said, watching me watch her, “What?”

Continue Reading…

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Second Guessing and Seventeenth Procedure

Ibodiesn the years since my daughter’s medical mystery was solved, I’ve struggled to silence the what-if voices that whisper to me in quiet moments. What if we’d figured this all out when she was two? What if we’d figured it out when she was four? What if we’d figured it out at five? What if her care had been managed by a multi-disciplinary team from the very beginning?

These what-ifs serve no purpose. They don’t change anything about the moment I inhabit right now, a moment in which Sammi, my resilient, remarkable kid is currently riding an enormous horse with her best friend after gobbling pizza with her last night and sharing pancakes with her this morning. Her legs fill in her jeans, her cheeks are full and bright and sun-kissed, and I am truly, honestly, not worried about her. The what-ifs can’t touch that. They can’t touch her future.

Still. Continue Reading…

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Oversharing, Awareness, and the Muddled Middle

http://mamalode.com/story/detail/how-blood-dancesWhen my medically complicated daughter was only a few years old, a close family member said something that I’ve never been able to forget. I’ve thought about it often, especially as I’ve been writing about my daughter so publicly.

This family member was a new parent with a fussy, unhappy baby. He was complaining that nothing he and his wife were doing to soothe their baby was helping, and I asked if they’d asked any of the parents in their new baby group for ideas.

“No,” he said, “we’re just more private.”

“But maybe someone knows of something — a product or a position or something — that might help,” I countered.

“Look, that’s not how we are,” he answered. “That’s more you. You’d tell any random stranger in your kid’s kindermusic class all about her medical problems no matter what they’d think about you.”

At the time, I felt slapped. I felt hurt, and I felt judged. The tone with which this was delivered was so derisive, as though I was indiscriminately blurting out the story of Sammi’s first cardiac surgery to anyone who didn’t run away when I opened my mouth. It made me feel like an embarrassment.  Continue Reading…

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Summer and What to Do

summer chair at the lakeIt is summer here in the midwest, and like nearly every summer for the last nine years, I’m balancing conflicting impulses: to work as hard as I can in every moment my children’s schedules and propensity for all-day-tv-watching will allow, and to spend as much quality time as possible with my children while they still want to spend time with me.

We’ve had memorably difficult summers, of course, like the summer when Sammi, the sunshine of this blog’s title, began the first and most restrictive phase of her six-food-elimination-diet for eosinophilic esophagitis, and the summer after her aortopexy surgery, when I took her for feeding therapy every week. Those were sunny days with metaphorical thunderstorms always looming.

This summer, though, is as perfect a summer as I can imagine. Everyone is healthy. Both my daughters have just the right amount of independence and connection, and I am writing this from the window of a coffeeshop where Sammi left me on her way to day camp. She’ll pick me up later. I have a full slate of work, a hot latte, and not a single doctor appointment on our calendar for the foreseeable future. Continue Reading…

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