Hearts Break for Years

Swallow, My Sunshine: The Short Family Tragedy

I have anxiety and nightmares. Certain smells and hallways trigger memories every single time. Yet sometimes the memories return out of nowhere like a beeping sound from someone’s phone reminding you of the monitor alarms. None of this ever got easier…

Those words were written this spring by Megan Short, the mother of a two year old daughter Willow who received a heart transplant as a newborn. In a special post on the Mended Little Hearts of Philadelphia web site, she shares feelings any parent whose child experienced medical trauma can understand: fear and overwhelm, and the sense that her life would never be the same. Any parent who has sent a child — particularly a baby — into the operating room for major surgery can identify with the memories she shares.

What, thankfully, seldom happens to those parents and their families is what happened to the Short family last weekend. In a horrific turn of events that may never been totally understood or unravelled, the entire Short family was found dead in their home, a murder-suicide that took the lives of the parents and their three children, including two-year-old Willow, her transplanted heart lost to a family’s untreated emotional trauma. Continue Reading…

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My Bruised Birthday Heart

My daughter Sammi turns eleven tomorrow, and when I wake up, I will immediately start down the same well-trod path of many mothers: I will relive the day of her birth.

debibirthMy realization of this tradition began with my own mother retelling the story of my entry into the world, something she did with diminishing success over the years. As a child, I remember her tale of the planned induction beginning with the Chinese meal she ate the night before. She always smiled and rolled her eyes in mock-overwhelm as she described the obstetrician who lived across the street from the hospital and who padded back and forth all night to check on her as she labored, wearing his bathrobe. She always laughed when she remembered the paperboy poking his head in the door to sell her a paper a few hours after I was born, only to do a double-take at her feet still up in stirrups as the nurse tended to her underside. As the years have gone on, my mother muses over all these details less and less. After more than forty years of remembering, there are now some pieces of the story that I remember better than she does, just from the repetition.

My oldest child — my daughter Ronni — came into the world memorably, and I begin the memories of her birth more than a day before her birthday. I can recount it by the hours, still, fourteen years later. Although much was painful, and much was frightening, I recall the event with joy and celebration. I labored, I pushed, I struggled, and eventually I felt the indescribable sensation of my child passing through the space between my hip bones, my pelvis, and into the world. The beauty of it brings tears to my eyes, still. I can access those emotions easily, quickly, and feel washed in love and wholeness, knowing as I do now that it was the beginning of a relationship marked by tenderness and discovery.

Sammi’s birth is so much harder to retell.

Sammi 2 days

She was born a week late by emergency c-section, inexplicably tiny and riddled with health issues. For years after that day, there was seldom a break from worrying about her, seldom a moment when my body wasn’t called on to continue carrying her somehow — to nurse her, hold her, rock her, drive her to the hospital, drive her to doctors’ offices, administer medicine, hold a breathing mask over her face in the middle of the night, pull underwear up her legs under a hospital gown. I was constantly peering at her ears, her mouth, her nose, checking to see if her ribs were protruding more than last week, literally and figuratively weighing her. I fed her with the intensity of a brand new mother, always.

In many ways, Sammi’s birth — and my labor — went on for nine years. It started on the day of her birth and stopped one beautiful day in October of 2014 when her good health shone clearly and she was, for me, finally born. Just like other labors, in those nine years were moments of pain I didn’t think I was really able to bear and moments of rest when I gathered strength for the surges that were coming. Just like other labors, sometimes I begged anyone nearby for help and sometimes I silently clenched my jaw and squeezed the hand of my husband alone. Just like other labors, I was often selfish and believed the struggle was mine alone, and there were other times when I remembered that Sammi was trying just as hard as she could and that my husband was watching both of us, helpless to do more than offer comfort.

And just like other labors, it finally ended.

Remembering the day she was born is hard. It was the beginning of an uphill climb, and when you climb a mountain, you celebrate the summit with far more joy than you recall the moment you took the first step. There is too much journey in the middle. Still, I know that the day Sammi came into this world is important. It did not have the funny cast of characters my mother remembers from my birth, and it did not include the stirring, empowering moment of my older daughter’s birth, but it was the first hard leg of a journey that we both weathered in the end. What it lacks in positive imagery, I suppose it makes up for in the stuff of character-building.

I love Sammi with a fierceness I cannot describe, with a quality different — though not more or less — than what accompanies my love for Ronni. Sammi and I were in labor together for years. She may grow to forget as much of it as my mother now forgets about my birth, but I will never forget how our bodies were linked, how we strained, and how when it was done, there we were: born.

born

Happy birthday, Sammi. I’m achingly grateful that you are here.

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Unexpected Miracles in Unpleasant Places

gfchallahA through line — sometimes faint, and mostly cultural — in my journey of being a wife and mother has always been my identity as a Jewish woman. Like so many people in my generation, I was dropped unceremoniously at the door of the religious school three days a week, twice for Hebrew lessons that were little more than decoding an unfamiliar alphabet, and once for the study of Jewish laws and history. I sat through many Friday night Sabbath services enthralled with the voices of our choir and of our cantor, a deep bass whose lowest notes made me imagine the voice of G-d. I went to three days of services on the High Holy Days, had a Bat Mitzvah in which I chanted a Haftorah portion that I’d never seen translated into English. I knew which foods went with which holidays: challah with the sabbath, apples and honey and mandelbrot with Rosh Hashanah, matzo ball soup with Passover.

It was all a ritual and surface-level observance. What held me to it was my mother and father, and their parents, and the parents before them, the long tail of history and the other-ness that held us together. “In the end,” I was told over and over, “you’ll be seen as a Jew no matter what you do.” Of course, that was a reaction to the recent history of the Holocaust, but I took it at face value, as least as it applied to the wider world’s opinion.

As a young adult, I fell in love with and married a Jewish man whose connection to Judaism had been stronger than mine, but brutally interrupted when his father died far too young and far too suddenly. He believed in having a Jewish home, but neither of us paid particular attention to the particulars of that. Before we had children, it was still the faith of our parents.

Becoming a mother forced me to decide how to reconnect to this faith in a way that would mean more to my children than whatever the Hebrew lessons and matzo balls had come to mean to me. Rather than a religion of their parents, I wanted my children to see themselves as Jews of whatever type moved them.

And then Sammi, my younger daughter, was born with a host of medical issues that took years to unravel. For many holidays during the years when her health changed our entire family’s diet, the connection of faith and ritual to food became tenuous. How do we define the sabbath without a challah? For that matter, how do we define a challah? According to Jewish law, a challah to be used for religious purposes has to be made of wheat, barley, spelt, oat or rye. What, then, of my gluten-free challah during Sammi’s six-food-elimination diet?

Was that challah Jewish? As I grappled with why this was the path my little girl’s health had taken, was I more than a mother pantomiming faith for her children? Continue Reading…

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Summer and What to Do

summer chair at the lakeIt is summer here in the midwest, and like nearly every summer for the last nine years, I’m balancing conflicting impulses: to work as hard as I can in every moment my children’s schedules and propensity for all-day-tv-watching will allow, and to spend as much quality time as possible with my children while they still want to spend time with me.

We’ve had memorably difficult summers, of course, like the summer when Sammi, the sunshine of this blog’s title, began the first and most restrictive phase of her six-food-elimination-diet for eosinophilic esophagitis, and the summer after her aortopexy surgery, when I took her for feeding therapy every week. Those were sunny days with metaphorical thunderstorms always looming.

This summer, though, is as perfect a summer as I can imagine. Everyone is healthy. Both my daughters have just the right amount of independence and connection, and I am writing this from the window of a coffeeshop where Sammi left me on her way to day camp. She’ll pick me up later. I have a full slate of work, a hot latte, and not a single doctor appointment on our calendar for the foreseeable future. Continue Reading…

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What to Bring

bagIf you are ever the person I was, packing a car to drive to the hospital for your daughter’s seventeenth time under general anesthesia (this time, to move her aorta away from her esophagus), you will need to bring many things with you. Take notes. I know exactly what you will need, if you are ever the person I was.

First of all, you need clothes for you. You need soft pants and a roomy shirt to sleep in on an uncomfortable set of cushions by the window, cushions whose ill-suitedness for restful sleep you will not notice as you sink, delirious with exhaustion, in and out of a black slumber twenty times a night. You need thick socks and slip-on shoes so that you can perch on the edge of the bed and then jump off quickly to skitter across the room and grab the emesis basin, the phone, the nurse’s call button. You need more hooded sweatshirts than you would have predicted. You will be far colder than one would expect.

You do not need clothes for your daughter. Though you may have thought ahead to the incisions and the need for button-down as opposed to pull-over pajamas, you have somehow forgotten the snaking tubes and lines and leads and wires that would need to be disconnected in order to manage something as complicated as sleeves. She will only need hospital gowns. The pajama bottoms, while a nice touch, are only an impediment to quick bathroom trips, of which there will be many.

Perhaps, just bring her some socks. Continue Reading…

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