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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Non-Holiday Holiday Expenses

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The holiday season is coming, and I can’t stop thinking about brain surgery.

In July, Vox magazine did an informal assessment of the cost of the blood clot surgery that Senator John McCain underwent. Because he would be the deciding vote in the Senate’s repeal of the Affordable Care Act, the discussion in Vox’s article centered on what that same surgery might cost someone with no health insurance at all. Their best guess, determined based on both public reports on the name of the procedure and Mayo Clinic estimates of their own costs to perform that procedure, was $76,000. It is an impressive cost, and one which would be daunting to anyone, let alone someone struggling financially to the degree that they cannot afford health insurance.

Imagine you have a child who needs that surgery in one of the states where CHIP funding (federal Children’s Health Insurance Program) is about to run out. If the budget passes as currently proposed, the program dies, along with tremendous numbers of tax breaks for middle-income families.

Fast forward to the holidays, and the cost of a procedure like that leaves no money in anyone’s pocket for even a string of blinking holiday lights.

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Write the Story You Need to Read

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“rapid breathing of the newborn”

“morbidity vascular ring repair”

“esophageal dilatation toddler”

“vascular ring story blog happy ending”

“double aortic arch multiple surgeries”

“afraid my child will die”

“misdiagnosis eosinophilic esophagitis”

These are all real search terms I’ve typed into Google in the years since my daughter — now twelve years old and completely healthy — was diagnosed with a Double Aortic Arch just after her first birthday. In the intervening years, I typed those words into a desktop computer while nursing her on a big pillow in my lap or while she played on the floor nearby with her big sister; on a laptop at a coffeeshop while she went to preschool; on my first smartphone while I waited for her to come out of general anesthesia. I’ve been searching for stories like hers since I knew she’d have a story to tell. Continue Reading…

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Faking It

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I am afraid. Almost all the time, in the back of my head, there is a low rumble of fear: that my husband will be hurt on his drive home from a business trip; that my older daughter won’t be safe on the bus and the train; that my younger daughter will be bullied; that I will suffer from the same health problems as my parents and grandparents; that there will be war; that we will lose our health insurance; that someone will open fire on everyone I love. During the years of my younger daughter’s most intense medical drama, that fear and worry vibrated through every move I made, consciously and publicly.

These days, though, I experience fear in much the same way that I absorb nutrients — unknowingly, unaware until the worry stops, when I realize that something has released in the back of my shoulders. It seems like an instinct to be imagining the worst. Perhaps it’s a mild form of post-traumatic stress, from a time when the worry was well-founded.

Right now, though, I’m sitting in my kitchen shaking over my coffee after what appears to be an unfounded school shooting threat at the high school my older daughter attends and where, today, my younger daughter will visit for a fine arts field trip. Overnight, I slept fitfully as the police investigated. I waited to make the determination of whether to send my daughters to school and, in the end, after vague but reassuring emails from the school, I sent them off. I breathed in the scent of their shampoo and told them how dearly I loved them, and I released them into the wayward world.

My older daughter knew what was happening and trusted in my decision. My younger daughter did not know, and I opted not to tell her. As I navigated both choices consciously, based on their personalities and inclinations, I felt my hands shaking and tucked them into my sleeves. When they left, I used my shaking hands to make coffee and sit in the silence.

In a few days, I will begin a month of conscious daily writing as part of the Nano Rebels, a group of non-fiction writers participating in National Novel Writing Month. As always, I am committed to writing the story of my conscious parenting during my daughter’s years of medical uncertainty. As I took stock of myself this morning, I thought I would re-open the most recent chapter I’ve been writing, and, as always, the universe provided me with exactly what I needed. Here is an excerpt from this chapter-in-progress, in which I discuss the ways we approached our younger daughter’s preschool-aged tantrums. They were epic and, most likely, related to her constant hunger, something we wouldn’t realize for years. We’d been seeing a therapist to help us manage these violent tantrums:

[Our therapist] had taught me to sit down on the floor, cross-legged, and pull Sammi into my lap with her back against my front, firmly. Then, I had to wrap my legs around her lap and hold her hands down at her sides. If I did this right, it worked like a human straightjacket for Sammi, keeping her from banging her head, biting anything, or throwing herself backward onto the hardwood floor.

This accomplished more than just keeping Sammi safe during a rageful tantrum, which came less and less frequently as she approached age four. It also forced both Sammi and I to see that I could – and would – keep her safe. Holding her as she screamed and flailed fruitlessly felt, in many ways, a lot like the way I experienced myself at her bedside in the operating room. I was calm because I had to be calm; I was there because I was the best possible person to be with her; I did it because I was her mother and she needed me. On the floor of our living room, wrapped tightly around her as she bucked and thrashed, I was touching her with more of my body than I had even used when she was a baby growing in my womb. I felt, sometimes, as though I was pouring some kind of spiritual nutrition into her during those moments. It was composed of primal nurturing, nurturing that has at its core the protective properties of pure love.

Years later, I read about the proven health benefits of something called “the 20 second hug.” Research by the department of Psychology at the University of North Carolina in Chapel Hill (http://www.reuniting.info/download/pdf/WarmContactPaper.pdf) showed that a 20 second hug between romantic partners lowed blood pressure and heart rate far more than 20 seconds of rest. In remembering the time of my parenting life when I regularly sat down and wrapped my entire body around Sammi for between one and five minutes, I recall the way that she eventually went limp, sniffled and shook with a deep sigh, and said, “I’m ready to be calm, Mommy.”

Usually by then, I, too, was calm.

 

As parents, we are often called upon to be calm for our children, to put on a “brave face” so that we don’t scare them. This is not to say that there is no place for vulnerability or honesty in our parenting; after all, children also need to see that emotions are real and deserve to be honored. Sometimes, though, as the central nervous system takes over my thoughts, being forced to be calm for my children eventually brings me the same relief it brings them. In that way, every time I can “fake it til I make it” with regard to the low hum of fear in the center of my chest, the more likely I will be able to feel that calm for real.

It’s a hard day. There will be more of them. I will sit with the fear, drink my coffee, and listen for the all clear.

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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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