One Day on the Six Food Elimination Diet

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Between June of 2010 and May of 2011, my daughter Sammi progressed through the six food elimination diet for a rare inflammatory disorder called eosinophilic esophagitis. In an effort to determine which — if any — of the most commonly allergenic foods might be irritating the tissue inside her esophagus, her gastroenterologist asked us to remove dairy, eggs, soy, wheat, and all nuts from her diet, which was already vegetarian. One by one, we added foods back in as endoscopies and biopsies guided us as to the foods that seemed to be safe for her.

On this blog, the most popular post is called Practicalities of the Six Food Elimination Diet. It was my first effort to write the content that I wish I could have read while Sammi was on this diet — a lot of empathy and even more practical, straightforward advice on where to start. So much information on elimination diets online focuses on adults who can, for the most part, understand that what they’re doing is for their own good. Adults can sit in front of uninteresting, repetitive meals for weeks on end and make their peace with it. Children often don’t have that same ability.

As I’ve seen how popular that original post of mine has become, I’ve wanted to add to it, to provide more information to families who are struggling to feed their children with both attention to the restrictions of the diet and with love and compassion. To that end, I wanted to share a typical day for Sammi — who was five years old at the time — when she was on the full elimination.  Continue Reading…

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2017: Counting and Not Counting

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In December of 2014, I had my first meeting with Deborah Siegel of Girl Meets Voice, a consulting firm helping women get their thoughts and world-changing ideas out into the world. Deborah looked with bright, interested eyes over the table at me and asked, “what’s your idea? what do you need to say?”

I had walked into that meeting thinking that I knew exactly what I wanted to say, but when she asked me so directly, I wasn’t sure. I stammered out that I wanted parents to feel empowered to push against doctors who weren’t listening. I added that I wanted those parents to feel less alone, that their worries were shared and that they had more in common with each other than their distracted glances in crowded hospital waiting rooms.

“I want to write a book,” I said. Continue Reading…

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Layover in Holland

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Within the community of families with special-needs children, there is a well-known poem/essay called “Welcome to Holland.” It became famous in this community because some loved it and felt it really spoke to them, and some found it galling and infuriating. In “Welcome to Holland,” the writer, Emily Perl Kingsley, compares life with children who have special needs to a flight she expected to arrive in Italy, only to touch ground permanently in Holland. The rest of her life is filled with experiencing all the real, tangible beauty of Holland, even as she has to hear all the stories of Italy she will never experience firsthand.

It’s an obvious metaphor, and certainly simplistic, but it’s easy to see the comfort it might provide. Few pregnant mothers dreamily stroke their stomachs and imagine the beauty of the metaphor in which Holland stands for a life of health struggles and emotionally draining paths to seeing one’s child’s basic needs met. However, once they stand in on the tarmac in the strange land they’d never considered, it’s only human to peer into the distance and seek out the tulips. Those tulips are real, at least some of the time. Continue Reading…

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Write the Story You Need to Read

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“rapid breathing of the newborn”

“morbidity vascular ring repair”

“esophageal dilatation toddler”

“vascular ring story blog happy ending”

“double aortic arch multiple surgeries”

“afraid my child will die”

“misdiagnosis eosinophilic esophagitis”

These are all real search terms I’ve typed into Google in the years since my daughter — now twelve years old and completely healthy — was diagnosed with a Double Aortic Arch just after her first birthday. In the intervening years, I typed those words into a desktop computer while nursing her on a big pillow in my lap or while she played on the floor nearby with her big sister; on a laptop at a coffeeshop while she went to preschool; on my first smartphone while I waited for her to come out of general anesthesia. I’ve been searching for stories like hers since I knew she’d have a story to tell. Continue Reading…

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Do Not Undo My Work

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All around the country, parents are furious.

Some of them went to great lengths to have their children. They went through infertility treatments for years, day after day of injections, procedures, medications and mood swings and worry, meditating on the child they saw in their dreams. They held their breath through much of their and their partners’ pregnancies, that child’s existence suspended by threads in their hearts. They held their partners’ hands through every ultrasound, every test, every kick and wiggle. When their children finally arrived, those arrivals were the most hard-won battle they’d ever faced.

And those parents are wondering now if, one afternoon, a storm might blow the windows of their houses in, eliminate their access to electricity and running water, coat their walls in mold and make that child, that blessing they begged for, sick. And that they might be holding that child in their arms on the roof, waiting for relief that spells out that child’s survival, if it comes. And those parents, imagining the roof, the cold, the squirming frightened child, are angry.

Some parents knew their child was waiting somewhere for them, if not in the cells of their bodies, then elsewhere: in a foster home, in a pregnant woman not ready or able to care for a child, nearby or across the state or across the world. Those parents waited for years — through paperwork, through interviews, through false starts and second thoughts, through faith and desperation, until one day that baby or that toddler or that teenager joined them in their living room, forever, making them a family.

And those parents are wondering now if, one afternoon, they’ll receive a call from their child’s school about an active shooter in the area. They’ll wonder if every door will be carefully locked, if every student will be safe, if their child — their sought-after, destiny-made child — will be inside, or will the call come at recess time? They are wondering where the nearest gun shop is. They are wondering where the nearest guns are. And those parents, imagining the classrooms of frightened children, imagining their frightened children, are angry. Continue Reading…

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