Layover in Holland

layover-in-holland

Within the community of families with special-needs children, there is a well-known poem/essay called “Welcome to Holland.” It became famous in this community because some loved it and felt it really spoke to them, and some found it galling and infuriating. In “Welcome to Holland,” the writer, Emily Perl Kingsley, compares life with children who have special needs to a flight she expected to arrive in Italy, only to touch ground permanently in Holland. The rest of her life is filled with experiencing all the real, tangible beauty of Holland, even as she has to hear all the stories of Italy she will never experience firsthand.

It’s an obvious metaphor, and certainly simplistic, but it’s easy to see the comfort it might provide. Few pregnant mothers dreamily stroke their stomachs and imagine the beauty of the metaphor in which Holland stands for a life of health struggles and emotionally draining paths to seeing one’s child’s basic needs met. However, once they stand in on the tarmac in the strange land they’d never considered, it’s only human to peer into the distance and seek out the tulips. Those tulips are real, at least some of the time. Continue Reading…

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Drenched and Beautiful

cloudy

One morning, I went out for a run. I had a busy, chaotic week ahead of me, with puzzles to solve and a full range of emotion to experience, and I wanted to clear my head, to shake out some anxiety, and to take an uninterrupted look at the world around me.

When I looked outside, the ground was wet and the sky was grey. Would it rain? I checked the weather on my phone, and it forecast no rain at all. I left my sunglasses dangling over my back door knob, turned on some music in my headphones, and headed out.

The rain overnight had left everything glistening with droplets of water, and the grey skies made every color seem brighter and more saturated. As I’ve done for the five years I’ve been running, I stopped whenever I saw something particularly beautiful, looked closely, and snapped a photo.

Not two blocks from my house, a father and son living in a row of townhouses have taken over their building’s street-facing garden. The flowers there are spectacular, and careful planning means that new blossoms are always greeting me as the seasons pass. That week, it was their pink hibiscus that was most prominent. I stopped, paused the music in my headphones, and took a photo:

hibiscus Continue Reading…

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No Way Through It But to Do It

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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…

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How to Feed the People You Host

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I’ve spent some holiday dinners eating dry bread and salad.

In front of me on the table were platters piled high with other food, but because of a combination of my vegetarianism and allergies, only the bread and salad were real options for me. In those moments, I harbored no ill will toward my hosts; having hosted holidays before, I knew that it took a lot of work to accommodate the preferences and allergies of a complicated group of guests. It’s not a job for an inexperienced or inexact home chef. I knew all this as I sat and ate my undressed salad, nibbling on my plain bread, and I wasn’t bitter.

Still, I’ve tried never to do that to a guest in my own home unless I had no other choice. Over the years, I’ve had guests for Jewish holiday meals who ate no carbohydrates, no grains, no gluten, no dairy, no beans, no soy, no tomatoes, no nuts, no broccoli, no cinnamon — not to mention the years when my own child was on the six-food-elimination-diet or the chylothorax diet. I’ve managed, in most cases, to offer at least two tasty options to each person — even options that others at the table would enjoy, too. It takes planning, but it’s not impossible.

Here’s how I’ve done it: Continue Reading…

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A Letter to My Friends Coping with IEPs and 504s

Dear friends,

i-see-you-worried-parentsI 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…

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