Padding

padding-relief

 

She’s ok, I thought, looking at her on the couch with her water bottle and her picked-at bowl of green jello. She’s ok and she will be ok. She’s ok and she will be ok. She’s-ok-and-she-will-be-ok, she-will-be-ok, she-will-be-ok, she-will-be-ok…


Parents like me, whose children have been through medical scares or ongoing health-related issues, often talk about the long-term anxiety that follows. Certainly in the immediate aftermath — even once the drama is months behind us — the expectation that we’ll worry more about our children is palpable. After my daughter Sammi’s last major surgery, the teachers and administrators in her school were incredibly kind and as careful as they could be to accommodate her healing, even in ways that might have been fussier than necessary for her but were utterly crucial for me and my comfort level. On major milestones — when she was allowed to return to recess, when she ate her first sandwich after years of a damaged esophagus, and on the anniversaries of the surgery that healed her, friends have cheered and celebrated with me, remembered and sighed in relief at my side.

But now it has been three-and-a-half years since the biggest legitimate worries subsided. There can be no mistaking her vitality. While there were years when even strangers could look at my daughter and suspect something was not quite right, now the most they might notice is that she’s slightly shorter than her classmates. I have little on which to base my worry these days, except for history and, I must admit, mild post-traumatic stress. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

At Twelve

attwelve

It’s August, and I can’t believe she’s twelve.

I remember the August twelve years ago, after I finished a July of laying on the floor of my office, the door closed, my feet on the back of a chair, trying to turn my stubborn breech baby. I placed earbuds at my pelvic bones and played fiddle music in the direction I wished her head would face. When she turned finally, one night in late July, I felt every organ in my torso shift, roll and right itself again in one nauseatingly relieving motion.

In retrospect, it was a sign: with enough work, everything would eventually be repaired, over and over again. My girl, who always kept me on my back with legs in the air, directing my world from the floor, has now turned twelve, reaching down to offer a hand and pull me up. When I rise, she stands next to me and steps to one side to rest her cheek in the hollow between my shoulder and neck.

She’s grown. Improbably, in defiance, literally right under my nose now. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Oh My Goodness

ACA-relief

This the face of one seriously relieved mother.

I’ve watched the heath care legislation being volleyed across Capitol Hill in Washington, DC for the past several months with what one might call significant personal interest. I’ve refreshed APNews, The Guardian, Fox News, CNN, and Twitter more often than any other moment in my life, trying to get a sense for what might happen next, tracing the path of my family’s future as it zipped past us, back and forth. Protections that allowed me to focus on the moment with my daughter as we unravelled her mysterious health challenges over the first nine years of her life have spent the last few months in question, threatened by elected officials who seemed to favor the interests of huge insurance companies over those of children like mine.

Last night, it seemed that compassion tipped the ball over the net, just barely. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

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

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…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather