Category Archives: weight

Loose Ends

The pensive platform-makers at Girl Meets Voice shared a quote this week that had me nodding at the screen:

It seemed karmic, somehow, that I would read this reflection in the same week when finally, after years of thinking-about-it, I sent away the application for my daughter’s full, unabridged medical records.

The circumstances seemed a little like destiny. One morning, digging my way through several days’ worth of ignored email, I saw a message from the hospital where she’d had all of her treatments, telling me that I needed to complete additional paperwork with her signature if I wanted continued access to the abridged records they keep on their online portal. At age twelve, it seems, they want their patients’ consent for parental access. I clicked on the link to download that form and noticed, on the same page, the link to download a request for full records. Without taking much time to change my mind, I clicked that link, too, and downloaded both forms.

A year ago, I had visited the medical records department of the hospital when I was there to visit a friend’s child. Propelled by a feeling of both excitement and dread, I asked for copies of everything and was told that such a request takes weeks to process, and required the completion of a written request. At that point, dread won, and I walked away without doing anything.

Now, however, it has been more than three years since the surgery that finally liberated my daughter’s esophagus. I no longer hear her cough and wonder if she can’t breathe. I don’t have to make vacation plans around her procedures or whatever strange diet she might be on. She’s slowly, slowly gaining height and weight. The remaining signs in her of a sickly past are limited to the long scar on her back and, perhaps, to a missing inch or two in height.

In the years when we were still in the thick of it, I sat often enough in rooms with doctors that I could ask questions about what they thought and why. At first, they thought it was loose tissue in her larynx that made her breathing so loud. Then, they thought it was the extra arm of her aorta that choked her so tightly. Then, they said it was food intolerances keeping her from eating well and growing. Finally, they found the meandering artery smashing her gullet, and a surgery to move it away changed her trajectory from illness toward robust, glowing health. She seldom talks about it anymore, absent-mindedly eating a bucket of popcorn, a bowl of cherries, an overflowing bowl of pasta.

For me, though, there are a few loose ends. Sometimes I turn a corner and feel them flapping behind me when I hear a nearby baby cough. They tickle my ankles and make me lose my balance for a moment every time I watch my daughter get a vaccination or a blood draw. Mostly, though, they float into my vision when I’m paying medical bills and go to file anything in her huge, bulging folder of insurance paperwork.

They nag at me: why did this go on so long? Why did the doctors who missed her diagnosis disappear and stop returning our calls? What kind of test results went unnoticed, what kind of clues did we miss?

As I begin to flesh out the book-length version of my daughter’s medical mystery, I realize that the experiences alone are not enough. At first, they were all I could stand to share, but without a conclusion drawn from them, they amount to nothing more than a wild story for a cocktail party. After three years, I am ready to tie this package up in twine and to label it in uppercase letters. What will the label say? MISDIAGNOSIS. NEGLIGENCE. APATHY. CORPORATE MEDICINE. FATE. MALPRACTICE. UNSOLVED MYSTERY. RARE. SILOS.

I’m ready to find out.

loose-ends

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Practice Mom

tween
Every morning when I wake up, I lie in bed and listen to the radio for a few minutes. I am a morning layabout, suddenly, even if it’s just for long enough to hear the news snippets and the day’s weather. Below me, I hear the muffled sounds of my two daughters getting ready for their day. They’ve been up longer than I have.

This year’s mornings, I find I am no longer a lunch-maker, a breakfast-nagger, a pill-preparer, or even a walk-you-to-school mother of young children. This year, my daughters do all of that themselves.

Much like in the early years of my motherhood, when I tiptoed around my own instincts to see what worked and what didn’t, I am auditioning my moments of parenting with my tween and teen daughters. Particularly with my little one — no longer quite as little — I am working on the line between playful teasing and hurtful taunting; on the right time to help her find solutions to her worries and the right time to listen and offer no advice at all. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Across the Border

fromthebackI’ve been thinking about resolution and falling action, lately.

In any compelling story, there is a natural building of intensity that leads, as we all know, to a climax. A couple searches for each other, meets, falls in love, and commits or separates, and they’re left different, marked by their experiences. Or: a world is beset by confrontation and battle, factions emerge, one side is victorious or decimated, and a new world is born. Or: a child is born to a yearning mother, grows sick, struggles, stumbles, regains her footing, and is cured, revealing mother and child older, changed, and almost unrecognizable.

That’s the resolution. What happens next? What is in the falling action of my story, the third story, the one with a once-sick now-well daughter, and a once-frightened now-what mother?

My daughter is eleven now, almost three years past her final surgery, two-and-a-half years past the time she first began eating well, two years past her dismissal from all her specialists, two years past the first major gains in height and weight she’d had since her babyhood. I haven’t had reason — real reason, justifiable reason — to worry about her health in the last two school years.

It has been, in many ways, like becoming a mother all over again. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

The Hands and Feet of Napping

meshugalunchWhen my daughters were little — five and two, perhaps — and past the age of napping, I sometimes found myself desperate for any way at all that I could get even a little bit of mid-day sleep. I cleared the lunch plates of their detritus of blueberries, macaroni, and blobs of yogurt, feeling the lethargy settle on me and press my eyelids down even as I heard the first gleefully-shouted requests to go to the park. No way, I thought. No park. I can’t even imagine it. The coats alone…no.

In this, I’m sure I was no different than millions of other at-home moms who begin their day at 5am and race through it until they collapse, bleary-eyed, into their beds at night. These other mothers almost certainly have their own strategies for recharging mid-day; I have friends who used anything from “quiet time in your room” to a walk toward the nearest coffeeshop. I tried some of these things but nothing really worked. If I insisted they stay in their rooms, the constant squealing, questions about “how much longer?” and requests for snacks kept my frustration at a low boil — not very restorative. If we went to the park or out in search of an afternoon treat, I was worn down further by the process of getting everyone ready and out the door and of keeping my squirmy running toddler out of the street.

In the end, on those days when I simply could not roll out another pancake of Play-Doh or braid another head of doll hair or read Eloise Takes a Bawth one more time, I weighed my exhaustion and ill temper against the potential damage of the television and, against all advice by the American Academy of Pediatrics, we — gasp! — watched a movie. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

They Called Me Again

I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.

“Hello, is this the parent of Samara Lewis?” someone asked.

I walked several rooms away from my family and answered, “Yes, who is this?”

“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”

I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather