The Sound of Water

glassofwaterMy eight-year-old daughter took a long drink of water through a straw, and I waited on the edge of a pin (on the edge of her hospital bed) to ask her a question.

As the first few drops of liquid hit her tongue, she did what she’d always done when drinking: she puffed out her cheeks like a chipmunk and held the water there. Slowly, I watched her throat as she began to swallow. Her eyes widened, and she swallowed everything in her mouth at once.

Finally, I asked. “How does swallowing feel, Sunshine?”

She set down the cup on her tray and looked at me, her hands fluttering up to her chest, trailing IVs and tubes behind her. The late afternoon light through the far window didn’t reach her bed, and so, lit by fluorescent lights above and dazed by morphine, she rested back on her pillow and answered:

“It feels so different!”

“How so?” I asked.

“When I swallow, it goes down like ssshhhhhwwwwwwww!”

“And what was it like before?”

“It was like ccchhhhk, ccchhhhk, ccchhhhk…”

With her skin still clammy and pale, only hours out of surgery, she reached again for the cup, drank another gulp, and said, “It’s so cold when it gets to my tummy.” Continue Reading…

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Terrible Conversation, Part II

conversationGiving a child bad news hurts on every level. Integrity tells us to be honest, realistic, straightforward. Nurturing tells us to soften the blow. Getting the combination right means compromising both.

When we had to tell our daughter Sammi just before her fourth birthday that she had been diagnosed with an inflammatory disorder called eosinophilic esophagitis, we did it in an age-appropriate way that, thankfully, also forced us to simplify the problem for ourselves. The new diagnosis meant a host of food restrictions that would change over time, but we focused on the first six weeks that would exclude dairy, eggs, soy, nuts, and wheat. I wrote about that conversation in a previous post:

We explained that we had good news; we now knew why Sammi’s food kept coming back into her mouth. Her esophagus was sick! We drew a body on paper, showed them where the esophagus was, drew a frown on it. We talked about allergies, about our friend’s daughter with celiac disease, about feeling crummy and then feeling better. We brought out the list of allowed foods and cheered along as favorites were listed.

At that young age, she was hardly able to comprehend it. Sammi ate what we gave her, followed the rules, and over the course of the next three-and-a-half years, endured more than a dozen endoscopies. She did everything we asked. She even participated in a barium swallow study and a strange and very uncomfortable CT scan without ever asking us why.

Sometimes, I feel horribly guilty that she never asked why. Continue Reading…

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Handouts for Doctors

Have you read my chart?Over and over in my head, I dissect what went wrong with my advocacy for my daughter.

When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.

When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.

We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed. Continue Reading…

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Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. 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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