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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This Could Make You Gasp

cough-syrup

What happened to me last winter could happen to thousands more people this year, and that’s not good.

I’ve never before heard a cough like the one I had this past December. It was something like the startled bark of a tiny puppy crossed with that puppy’s squeak toy. Or, it was like the highest, most urgent note of a harmonica, not blown-out but inhaled-in quickly. It was an alarming sound, and frankly, it didn’t even seem human.

At first, I thought it was just a bad respiratory infection, a common cold made more challenging by my moderate asthma. By the end of the first week, though, after three trips to the doctor in as many days, I was sure something bigger had happened to me. A chest x-ray didn’t turn up anything obvious, and so I was sent on my way with antibiotics and steroids, and I resigned myself to the couch for a full week.

The cough hardly changed at all, even on the medications the doctor prescribed. It made anyone who heard it shake their heads at me. It made me unquenchably thirsty; I drank 90 ounces of water a day, which is at least five times my normal intake of any liquid. My chest hurt. My stomach hurt. My throat hurt. The insides of my mouth hurt.

After a month, it wasn’t gone, so I went to my doctor again. By then, though the fevers were gone and my energy had improved, my voice felt precarious and ghostly, a craggy sound at best, and at worst, one I couldn’t even guarantee would come out when I opened my mouth to speak. My phone would ring, and I would open my mouth to say “hello,” only to croak out “…lo,” the first syllable lost in in my recent history somewhere, in a time when I could say what I meant.

My doctor sent me to other specialists – my asthma doctor and an ENT. My asthma doctor said she had a suspicion about what had happened and took a blood test. In the meantime, she prescribed more steroids and sent me to the ENT for a closer look at my vocal cords.

When the test came back – five weeks later, after I’d already discovered damage to my vocal cords and begun voice therapy – I wasn’t surprised. What I’d contracted in December was pertussis, also known as “whooping cough.” Continue Reading…

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They’re Not Here Anymore

sick-baby-tired-mama

It is early 2006. The woman holding the camera — a small digital camera with a flash, the only camera she has — is taking what someday will be known as a “mirror selfie,” and people will take them with their smart phones, which, in 2006, almost no one owns.

The baby in the photo is being held securely in a ring-sling, a native-style baby carrier that holds her snug against the woman’s chest. She is asleep, making a raspy, wheezing, wet sound which precludes the woman from doing the following:

  • talking on the phone
  • hearing anything on the tv
  • coping with anything but the most crucial, immediate needs
  • thinking

Continue Reading…

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Broken, Brittle, Patched, Softening

babysammiShe was outside my body for only a few moments before someone was suctioning her throat. I was paralyzed on an operating table ten feet away and I could hear the sound of the suction tube interspersed with the sound of her newborn cries.

“Listen to her cry,” the midwife, at my side since the start of the c-section, said encouragingly. “That’s a solid cry. She’s strong.”

She was six weeks old when she had her first bronchoscopy, 13 months old when she went under general anesthesia for the first time, and fourteen months old the first time a doctor opened her body up and laid an expert hand on her tiny aorta.

She was four years old when she started having regular endoscopies. She was five years old when she started remembering the road to the hospital and asking me if today was a day she’d go to sleep there.

She was eight when, finally, they fixed what was wrong.

She was nine when the bullying started. Continue Reading…

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We Know The Things

peas

I have never identified so closely with something written by another mother as I identify with a Mother’s Day essay written last year by Ellen Seidman of LoveThatMax.com.

Entitled, “I am the person who notices we are running out of toilet paper, and I rock: A Mother’s Day tribute to moms everywhere,” this essay includes Seidman’s lists of all the practical, life-improving practical things she notices in her own home. Among things like snack food and glitter and glass-cleaner are also the things like “shoes that fit” and recent family photos and storage for the growing collection of tiny toys from birthday party giveaways. Ellen, like most mothers, also notices uncharged electronics and plugs them in, and she realizes the vegetables in the fridge need to be used before they spoil, and she remembers to procure a gift for the next graduation party her family will attend.

In short, Ellen is a parent.

For most but not all of my female friends with children, Ellen represents in her blog post the inner workings of their minds at all times. Without question, many dads I know have a similar inner monologue, and Ellen notes in her blog that her husband has his own list going. In my house, actually, my husband notices the dwindling toilet paper supply long before I do, but I’m more likely to notice the absence of roasted seaweed, clementines, and red delicious apples before he does. Still, I definitely hold more of the practical, hands-on requirements of child-rearing in my head than he does.

In response, my husband has done a remarkable job thinking ten years ahead of me. When our daughters were born, he set up college savings accounts. He remembers to fund them, too. He handles detailed paperwork like school and religious school registration, health care savings accounts, vehicle research for our current one-car-every-decade-and-a-half car purchasing plan, mortgages, and managing things like making sure the roof isn’t falling in and, if it is, selecting a good roofing company with a good reputation.

And I buy the frozen peas.

Because of this division of labor, when I am forced to consider anything further than a few months away (“does she need new sandals for this summer?”), I find myself out of shape and ill-equipped for the task. I have a talent for dealing with this very moment, and that talent has been honed more than I’d care to have honed it in operating rooms and hospital bedsides over the last dozen years. I know how to throw resources into this very moment far better than how to plan for a moment in the distance. However, as health care plans for this country show a clear path toward ruin for my children, I was forced to get out of this moment and think about what might come next. Continue Reading…

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