Not Her Heart

heartWe entered the children’s hospital on a dark December evening. We didn’t bring a child.

Up the escalator to the lobby, to the registration desk for our badges, we made our way through the mazes of floors and elevators until we reached a place that looked like nothing we’d ever seen before: a carpeted hallway, two small couches, and an empty coffee table outside a closed door with no window.

We were not visiting the doctor in an examining room, we learned. There would be no paper-covered table, no swiveling chair, no cheerful posters. We were visiting the doctor in his office itself.

The door swung open, and he shook our hands. “I remember you guys,” he said, smiling. “It’s nice to see you again.” Continue Reading…

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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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A Test She Couldn’t Fail

glowheartWhen I was pregnant with my younger daughter, Sammi, I worked in an aging office suite with a highly-coveted tiny kitchenette. Other departments of the same non-profit had to go to the basement to retrieve and reheat their lunches, but our little corner of the building had a full-size refrigerator and a microwave.

That microwave must have been older than I was. In the years before having children, I often warmed my cold fingers in front of it as heat leaked out the seams in the door. Once I was pregnant, I wouldn’t even pass by the cubby where it rested if I knew someone was using it; I was afraid the radiation was seeping out with the heat, and I didn’t want to put my unborn child at risk of cancer before she was even born.

Then she was diagnosed with a rare congenital heart condition at the age of 13 months, and in addition to the chest x-ray she’d already had, she had to be put under general anesthesia so that her surgeon could get a clear picture of her vascular anatomy via computed tomography — also known as a CT scan. An IV allowed the flow of a contrast solution into her veins and arteries so that they would all light up in the scans. I sent her in — all sixteen pounds of her — and tried not to think about how much radiation she was absorbing. They needed those pictures. It was the only way to get them. Continue Reading…

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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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Weddings and Doctors

This week, I’m taking part in Brain, Child Magazine’s Brain Debate on the topic of inviting children to weddings and other formal occasions. It seems, at first glance, unrelated to my more usual subject matter. Here on Swallow, My Sunshine, I write about my younger daughter’s medical journey. What does bringing a child to a wedding have to do with that?

For me, the central issue in both these issues is instinct. When my brother and his fiancé forbade me to bring my newborn daughter, Ronni — my first born child — to their wedding, I was upset. I couldn’t understand it, and, as I describe in that article on Brain, Child, I tried to reason with them that I would be sure my newborn would not interrupt their ceremony. When I finally offered to have a sitter stay with my newborn baby in the hotel lobby, my sister-in-law-to-be shouted at me, “No! I will not compete with a baby at  my wedding!”

It made sense, then. It wasn’t about disruption or inappropriate behavior or my own distraction — it was about the possibility that a baby would upstage the bride. After only three weeks of parenting, we hired a postpartum doula to stay with our baby at the hotel where the wedding reception was held. Even then, the bride bristled at my desire to leave the reception and nurse my baby whenever the doula called; she had read that babies only need to nurse every three hours. Once I could see the situation for what it was, every instinct in me prickled against the woman my brother was about to marry. We were utterly different, she and I. My new baby daughter — her only niece, and at the time of that conversation, still growing inside me — wasn’t important to her. It was up to me (and her father) to care about our new daughter. Continue Reading…

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