Category Archives: food

A Healthy Family’s Thanksgiving

Thankful TreeFood and shelter. Family and friends. Good schools and teachers. I’ve been grateful for them every year as long as I can remember. This year, I am thankful for much more.

This Thanksgiving, I am grateful that none of my family members are in the hospital. No one is eating their Thanksgiving feast off a white tray while others take turns visiting. No one is disconnected from the big family meal because her heart is too connected to the hospital room and the child who is stuck there.

This Thanksgiving, no one is waiting for test results or surgery.

This Thanksgiving, I am grateful that none of us are following a medically prescribed diet. No one is reading ingredients in someone else’s kitchen, saying “excuse me, but what’s in that sauce?” No one is unpacking small, carefully-labeled plastic containers that hold a facsimile of Thanksgiving dinner, subtly resting her arms over her plate as “dangerous” food is passed over it on its way around the table.

This Thanksgiving, no one is on edge because of ingredients or cross-contamination.

This Thanksgiving, I am grateful that my marriage is intact. My husband and I did not break under the pressure of our daughter’s medical dramas. We did not stop talking about our own feelings and dreams when we became stewards of the feelings and dreams of our children. We have not stopped liking each other.

This Thanksgiving, no one has fallen out of love.

This Thanksgiving, I am grateful that my family is alive. My daughter did not die in the surgery that changed her life eighteen months ago; my parents are here and active; my husband and my older daughter have not been taken in a car or plane crash; I have survived every bike ride and run I’ve enjoyed.

This Thanksgiving, no one new is missing.

This Thanksgiving, I am grateful for the ways our bodies work. No one is struggling to help prepare the meal with arms in slings or missing. No one is pushing a walker to the table. No one is swallowing their food into a kinked esophagus, or skipping the meal while being fed formula through a tube.

This Thanksgiving, no one has lost an ability we take for granted.

This Thanksgiving, I know that had any of these blessings been missing, we would have still been grateful for the others that remained. It would still be a holiday. There would still be joy, celebration, moments of grace. I know that to be true as well as I know that there is no end to the blessings I can hold up and say thank you, universe. Thank you for protecting us from these things which threaten to chip away at our happiness.

Thank you, universe, for the elegance of the human body, for human life and community, for love and endurance, for a bounty of ways in which we can nourish ourselves, for those who care for our hearts, and for the ability to recognize our gifts.

This Thanksgiving, I am grateful.

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Inactive Waiting

waitingIn November 2013, a radiologist explained to me that my eight-year-old daughter Sammi’s aorta was smashing her esophagus into an unnatural shape that trapped food inside it every time she ate. After receiving that news — and the news that we needed to get my daughter evaluated by a cardiothoracic surgeon as soon as possible — I took my daughter to school.

A few days later, after confirming the referral with my daughter’s previous doctor and scheduling a CT scan for her, I went to meet with a client about the web site project I was managing for him.

During that week, and every week for the next several months, I researched upcoming medical tests and procedures and I volunteered in my daughters’ schools. I took Sammi to doctors’ appointments and managed my client project load. I planned travel. I spent time with friends. Everything looked the same, and for my daughters, everything felt the same.

Nothing was the same, though. Continue Reading…

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12 Questions I Wish I’d Asked My Daughter’s Doctors Before Every Outpatient Procedure

notepadNo matter how many times I sent my daughter into an operating or medical procedure space, it was always unnerving. Though eventually I knew what to expect — and so did she — there was always something I forgot to ask. Sometimes, even if I thought I’d heard the answer enough times that I didn’t need to ask it again, a new anesthesiologist or nurse followed a slightly different protocol, and I’d be taken off guard. Because of that, there were questions I wish, in retrospect, that I’d had the presence of mind to ask each and every time.

If you’re taking your child in for outpatient surgery or an invasive test, here are some things you might want to ask – and write down the answers in a notebook you can keep handy. Continue Reading…

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I Am Not a Fool, and Other Thoughts

hosesAfter ten endoscopies, a year of restricted diets, nearly six years of medication to block acid production in her stomach, diagnosis with an inflammatory disorder called eosinophilic esophagitis, and dozens of trips to gastroenterologists, my eight-year-old daughter slid under an x-ray machine, drank some barium, and lit up the screen with a reveal of her esophagus, kinked into utterly unnatural shapes. After the radiologist told me in a hushed voice that the indentations in her esophagus were coming from her aorta, snaking its way across the back of her body, I began to put all the pieces together on my own.

The esophagus is like a rubber hose stretched between two funnels —  mouth on one end and stomach on the other. For Sammi, on one side of that hose —  about a third of the way from the top — a firmer hose was pressing into it from the side, trying to make its way across. That was her aorta, arching down the right side of her body instead of the left, where most people’s aortic arch lives, because of a surgery she’d had to correct a double aortic arch as a baby. It partially succeeded in crossing, but when it met with too much resistance, it snaked down further and tried again, forcing Sammi’s esophagus to follow its path until that esophagus was shaped not like a long straight rubber tube but like a lightning bolt. Continue Reading…

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Just Finish

pleasefinishIn the fall of 2013, Sammi’s mealtimes became the most tortuous they’d ever been. Eating enough food took every free moment of her day.

Like the endless meals of her earlier years, Sammi’s times of sitting at the table became a fight between my instinct to fill our relationship with more than just the constant nagging to eat and my growing worry over how obviously difficult it was for her to get enough calories in a day. I could feel my blood pressure rise every time I watched her sit, holding a spoonful of uneaten food, and talk to me about what she had seen on television or what was happening at school. No food was tasty enough to hold her attention. She would rather do anything other than eat.

“Just. Eat. That. Bite,” I’d say with my back to her, clenching my jaw.

Ten minutes. Twenty minutes. Thirty minutes. After half a cup of cereal and milk, it was time to leave for school. On a good day, she would eat half of a small quesadilla, a few crackers, and one Oreo for lunch. On a bad day, just a few bites of her quesadilla. At dinner, she stopped every five minutes or so to refill her water, go to the bathroom, or inexplicably stand up and bounce next to her seat. By 7:45 — usually more than 90 minutes after dinner began — we would have to stop her meal so that she could go to sleep.

Massive doses of Prevacid — a proton-pump inhibitor that kept her stomach from producing acid — took away her symptoms, but anything less than a crazy dose returned her to us as the sunken-eyed, chronically underfed child we’d struggle to help through a day.

To say that this process was maddening is to touch only the surface of the fury it brought up in me. Why couldn’t she eat like a normal kid? I spent much of each school day in a state of cognitive dissonance, trying not to think of how few calories she was taking in, how little fuel she had to get her through gym class, recess, and a day of learning.

Her gastroenterology team told me, whenever I worried to them, that these kids with eosinophilic esophagitis are notoriously poor eaters. They feel nauseated a lot of the time. They have bad associations with food. They don’t know any different, so they can’t describe the feelings to us. This is their normal, the doctors and nurses told me. Continue Reading…

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