Twelve Years in Music

music-tools

I’ve loved music since I was a very little girl. My parents owned a record store before I was born; their music collection was spectacular, including every emblematic song of the 60s with rare gems thrown in. My earliest memories of their records are of the Beatles’ “All Together Now,” with its b-side of “Hey Bulldog,” a song so dark that it scared me. I can picture the green apple on the record label. I can picture the carpeted floor beneath me. I can remember the spot between the couch and the record cabinet where I sat and carefully edged the records out of their sleeves.

Like most people, my most powerful musical memories take me right back into the moment, bringing with them the smells and images and sensations that were present when the memories embedded themselves. In his fascinating book about music and the brain, the late neuroscientist Oliver Sachs wrote, “Music, uniquely among the arts, is both completely abstract and profoundly emotional. It has no power to represent anything particular or external, but it has a unique power to express inner states or feelings. Music can pierce the heart directly; it needs no mediation.”

These ten songs represent powerful piercings of my heart over the last twelve years of parenting my daughter Sammi, which was — as mothers of medically complicated children know — a more physical, spiritual, and emotional journey than the one I’ve shared with my older daughter. Of course there is powerful music to remember with her, too, but this music below served as survival tools in unique ways for Sammi and I. Perhaps these tools will help others, as well. Continue Reading…

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How to Make a Nest

making-a-nest-swallow-my-sunshine

How many people had to love this child for this picture to be here, bright and beautiful and nearly bleached-out with sunshine?

The grinning child in the center has been home from the hospital for five minutes, five minutes that followed forty in the car; forty minutes in the car that followed six days in the hospital; six days in the hospital that followed three hours in cardio-thoracic surgery; three hours in cardio-thoracic surgery that followed five months of knowing it was coming. Continue Reading…

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One Day on the Six Food Elimination Diet

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Between June of 2010 and May of 2011, my daughter Sammi progressed through the six food elimination diet for a rare inflammatory disorder called eosinophilic esophagitis. In an effort to determine which — if any — of the most commonly allergenic foods might be irritating the tissue inside her esophagus, her gastroenterologist asked us to remove dairy, eggs, soy, wheat, and all nuts from her diet, which was already vegetarian. One by one, we added foods back in as endoscopies and biopsies guided us as to the foods that seemed to be safe for her.

On this blog, the most popular post is called Practicalities of the Six Food Elimination Diet. It was my first effort to write the content that I wish I could have read while Sammi was on this diet — a lot of empathy and even more practical, straightforward advice on where to start. So much information on elimination diets online focuses on adults who can, for the most part, understand that what they’re doing is for their own good. Adults can sit in front of uninteresting, repetitive meals for weeks on end and make their peace with it. Children often don’t have that same ability.

As I’ve seen how popular that original post of mine has become, I’ve wanted to add to it, to provide more information to families who are struggling to feed their children with both attention to the restrictions of the diet and with love and compassion. To that end, I wanted to share a typical day for Sammi — who was five years old at the time — when she was on the full elimination.  Continue Reading…

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Faking It

worry

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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