Write the Story You Need to Read

write-the-story-you-need-to-read

“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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No Way Through It But to Do It

kids-and-homework

She is at the kitchen counter, tongue jutted out over her top lip, pencil in an awkward grip, tears rolling down her face.

“There’s so much of this!” she says, between strangled sobs.

I chop carrots, a profile at a counter perpendicular to the one where her science book, notebook, tablet, and half-eaten bowl of cheese crackers are scattered. Her hair is in her eyes, and she keeps angrily tucking it behind her ear. I put down the knife, rinse my hands, wipe them on the back pockets of my jeans, and walk gently and slowly around the edges of the counter. I pull her hair back and wrap it into a quick ponytail, and then I kiss the top of her warm, slightly-sweaty head.

“No way through it but to do it,” I tell her.

She falls forward, her head in her arms, and cries, still gripping the pencil. I rub her back, softly, and rest my cheek on her neck to whisper in her ear, little useless things about getting a drink of water, taking a five minute break, finishing her snack. She growls and rises, determined through tears to get it done.

I straighten and make my way back toward the carrots, noting that her sister is on the couch in the next room, laptop propped on her knees, papers everywhere, water bottle cuddled against her side. She’s absentmindedly eating a package of dried seaweed, listening to music, and occasionally holding her phone up at just the right angle for a photo containing only half her face. She looks up, and I blow her a kiss. She smiles, waves, and catches it.

The battle rages on at the counter.

I wonder what made my two daughters so different: the older one go-with-the-flow, flexible, arched toward satisfaction; and the younger one frustrated, questioning, mourning, her happiness easily won but equally easily lost. Continue Reading…

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Lemonade Out of Gluten-Free Lemons

grocery-cartSometimes, I just have to laugh at the way the universe answers the questions I haven’t even asked yet.

It’s half-way through the summer of 2017, and here I am, suddenly aware that I live with one foot in the summer of 2010. I spent that summer in a cloud of specialty flours: tapioca and arrowroot, garbanzo and white rice and coconut and and sorghum. I sprinkled xanthan gum like a gluten-free fairy into all the creative ideas I had for how to make food for my daughter, whose health challenges required that she cut out dairy, eggs, soy, nuts, meat, and gluten. During my deep-dive into specialty cooking for what I called the “joy-free” diet, I dreamed in recipes and grocery store trips. Along the way, I picked up several dozen grey hairs, but I also became an unwilling expert on food challenges.

Though my daughter’s health issues resolved without any need for her to continue with food restrictions, the knowledge I gained never went away. In some ways, it’s not unlike a spare tool in the garage; though we seldom need that particular odd-shaped wrench, the neighbors know we have it, and they can borrow it any time. Even though we may have bought that wrench to put together a hospice bed or to tighten bolts in a subfloor that collapsed beneath our feet — and seeing it brings back every memory of that awful time — we’re glad it’s going to use for someone else who needs it. That wrench — my reluctantly-gained knowledge — shouldn’t go to waste.

Because of this, my friends call me when they need to follow an unusual diet or avoid a common food. And because I want to make lemonade out of those gluten-free lemons, I always help. Always. Continue Reading…

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The Long Arms of Childhood Illness

Affordable care act calculator

If you saw my two daughters today, you would never know that some medical insurance companies would historically have considered them uninsurable.

My youngest daughter’s history of illness has been documented in my blog and detailed in articles in a variety of publications. From infant reflux to laryngomalacia to a congenital heart defect, from eosinophilic esophagitis to chylothorax, she has been under general anesthesia 17 times in her eleven years. Though the first nine were full of medical intervention, the last two following her final surgery have been nothing short of miraculous for her. She now eats well, has full energy, is growing, and leads a completely normal life. She has a pediatrician, a dentist, and an orthodontist — a far cry from the pit crew of specialists she used to see.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life. Continue Reading…

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The Gift of No Dessert

Swallow, My Sunshine: Blueberries in a bowl
My daughter pauses on her way to return the jar of honey to the cabinet, angles her body toward the counter, and reaches for her buzzing phone. Absentmindedly, one hand still holding the honey while the other wraps itself around the phone, her gaze travels down to the messages that have come in while we were eating dinner. I wait to see what happens next.

As I suspected, the honey drifts toward the counter, set down as the connection between my eleven-year-old and her new friends from middle school crackles back into existence again. She is absorbed, and I turn back to the sink to finish the dishes. Ten minutes later, I dry the last pot and announce, “Bedtime, kiddo. Up you go.”

“BUT!” she says, loudly, “I was gonna have DESSERT!”

“No time left,” I answer, squeezing her shoulders. “You chose to look at your phone for the last ten minutes. Put the honey away and let’s go upstairs.”

“BUT!” she repeats. “I’m HUNGRY!”

I look at the time and mentally inventory the fridge and pantry for the quickest thing. “There’s no time for regular dessert. You can eat one yogurt squeeze or a handful of blueberries. You have five minutes.”

And then, as she opens the fridge quickly and sighs, I take in her long legs, strong shoulders, and thick hair, and I am grateful for the three hundredth time that five minutes is plenty of time for whichever she chooses. Not so long ago, there would have been neither phone time, nor the choice of fruit, nor the option to begin eating anything with so little time to spare before bedtime.

Not so long ago, my daughter Sammi could barely eat anything in five minutes. Continue Reading…

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