October 5, 2017

Do Not Undo My Work

All around the country, parents are furious.

Some of them went to great lengths to have their children. They went through infertility treatments for years, day after day of injections, procedures, medications and mood swings and worry, meditating on the child they saw in their dreams. They held their breath through much of their and their partners’ pregnancies, that child’s existence suspended by threads in their hearts. They held their partners’ hands through every ultrasound, every test, every kick and wiggle. When their children finally arrived, those arrivals were the most hard-won battle they’d ever faced.

And those parents are wondering now if, one afternoon, a storm might blow the windows of their houses in, eliminate their access to electricity and running water, coat their walls in mold and make that child, that blessing they begged for, sick. And that they might be holding that child in their arms on the roof, waiting for relief that spells out that child’s survival, if it comes. And those parents, imagining the roof, the cold, the squirming frightened child, are angry.

Some parents knew their child was waiting somewhere for them, if not in the cells of their bodies, then elsewhere: in a foster home, in a pregnant woman not ready or able to care for a child, nearby or across the state or across the world. Those parents waited for years — through paperwork, through interviews, through false starts and second thoughts, through faith and desperation, until one day that baby or that toddler or that teenager joined them in their living room, forever, making them a family.

And those parents are wondering now if, one afternoon, they’ll receive a call from their child’s school about an active shooter in the area. They’ll wonder if every door will be carefully locked, if every student will be safe, if their child — their sought-after, destiny-made child — will be inside, or will the call come at recess time? They are wondering where the nearest gun shop is. They are wondering where the nearest guns are. And those parents, imagining the classrooms of frightened children, imagining their frightened children, are angry. Continue Reading…

September 29, 2017

No Way Through It But to Do It

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…

September 8, 2017

A Letter to My Friends Coping with IEPs and 504s

Dear friends,

I read every single Facebook post you share about your children.

When the school year begins and my children are worried about whether their friends will be in class with them, I see your worry scroll across the screen in a darker, more anxious tone. Will the new teacher understand your son? Will the school protect your daughter from her nut allergy? Will the one-on-one aide be reliable, communicative, loving?

I know you probably wonder if anyone whose child doesn’t need that level of support has even noticed you. Perhaps that flicker of wonder passes quickly as you walk away from the schoolyard each morning to a list of therapists and specialists to call, or perhaps it digs in more deeply as you watch other parents’ first-day-of-school photos scroll past, uncomplicated. Continue Reading…

September 1, 2017

Padding

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…

June 27, 2017

This Could Make You Gasp

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…

Swallow, My Sunshine

Feeding a Family in Medical Uncertainty

Category Archives: school