Category Archives: instinct

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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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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Holding Things

insideSammiBetween 2010 and 2013, between the ages of four and eight, my daughter Sammi had ten endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they inserted an IV with heavier anesthesia and fluids, took a blood sample, inserted a mouthpiece and fed a camera down into her esophagus. They took pictures and they took biopsies — tiny pieces of her esophagus to test for the presence of eosinophils, the white blood cells whose functions, according to Cincinnati Children’s Hospital, include

movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses. 

Ten times. They did that to her ten times in just over three years. They did that because she was still experiencing the symptoms of GERD — also known as “reflux” — past the age that a child would normally outgrow it. We took her to a major children’s hospital gastroenterology practice, a practice in the same hospital that had corrected her cardiac issue when she was a baby. Keeping everything in the same hospital made sense to us, at the time. All the records would be together, we thought. There would be less repeating ourselves, far fewer requirements of us to remember dates and test results — all the information would be stored with her chart.

We believed in the power of information sharing among professionals, which was a mistake. Continue Reading…

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The Telling

writershavenI am sitting in a loft in the beautiful Writers Haven, in South Haven, Michigan, overlooking Lake Michigan. For the first time since I gave up on a graduate program in creative writing, I am dedicating time just to writing. I spent money and unfathomable emotional capital to give myself two days here. It is fantastic, and it is scary.

From the outset of this blog, and long before its existence, I’ve wanted to write a book about what’s happened to my family since Sammi was born. Every child changes the family they are born into; we want that, or we wouldn’t have children. Sammi, though, brought with her such shattering and foundational changes to our dynamic and to our daily life that I absolutely can’t remember what I ever expected before she was born. What did I think our life would be? Did I even know?

Children with health issues are not news, not really. There is always a heartbreaking story to read about a child with a disease or a chronic condition. These stories tell us something about perseverance, or hope, or preventable tragedy, or miracles, or change. We know that our hearts will move with these stories, whether they are soundbytes in our social media feeds or heartbreaking book-length memoirs, and if the particular medical issue has touched our own lives, we nod knowingly, or call our family and say read this. Someone else gets it.

So, why another story about hospitals and illness, and a mother’s love? Why, after all this time away from my love of wordcraft, is this the story I want to tell? Continue Reading…

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