When my daughter Sammi was just over a year old, she had surgery to repair a congenital heart defect. After the worst of it was over and she was nearly — but not quite — ready to go home, they moved us from the ICU to the general ward of the children’s hospital.
In the ICU, each child has her own tiny room — about twice as wide as a twin bed — with a glass partition at the end of it. On the other side of that partition sits the child’s personal nurse, up on a stool next to a computer that monitors a host of vital signs and other measurements. That nurse has no other patients. When shifts change, two nurses fill that tiny space for thirty minutes, conferring and learning so that the new nurse has all the information necessary to sit vigil for the next shift.
In the general wards, the supervision is quite different. So are the rooms. When we got to the door, I went in and dropped all our stuff unceremoniously on the nearest chair, then stopped in my tracks.
“There’s someone already in this room,” I whispered to the nurse, pointing at the curtain and then at the loud tv tuned to cartoons. Continue Reading…
Most of my adult life has been propelled, in one way or another, by compassion.
As someone who began making a career in internet technology during the dot-com boom, I was always uneasy with what on earth I was doing by pushing pixels across a screen for a living. Who did I help, making web sites to prop up the egos of CEOs and corporate shareholders? It took me years to press my way into service to something with more value to humanity. By 1999, I was using the pixel-pushing skills I’d learned to support the voices of non-profit organizations. Necessarily, the budgets and the ability to innovate came later to these organizations. I could not charge them money they did not have; it was not greed that motivated their protest. My prices as a freelancer changed to reflect this. I adjusted and leaned toward compassion.
Then, when my children were born in the early 2000s, my entire life became an exercise in compassionate listening. A baby cried, unable to manage her emotions or get her needs met in any other way, and I held her. I sang to her, I soothed her. It seemed unconscionable to behave any other way. Another baby was born, this time sick and in pain, and she cried even more and for far longer than the first one had. My compassion was called upon constantly, to weigh my own needs against hers and to ask myself whether she had any other means of expressing her misery, any reserves of patience or space in her brain to make the developmental leaps a child with a full stomach and no pain can make. She did not, much of the time, and I needed to dig deep to find my own untapped wells of compassion. She needed every drop I had. Continue Reading…
There’s a saying about becoming a mother that, for all its overuse and cliche, is as true as anything I’ve ever heard. It explains perfectly my own experience of mothering, one I’ve tried to capture and describe in other ways only to come back, finally, to this beautiful quote attributed to author Elizabeth Stone. In full, it reads:
Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.
Of course, it’s not exactly my heart that runs off each day with my children. Rather, it is an enormous portion of my emotional power, vulnerability, and grounding to the corporeal world that surrounds each of them when we part. There is a piece of my intention for each day that I lend to them, a chunk of my personal energy that I gladly give away in service to whatever they need. Shorthand: heart.
That floating bit of my spirit is something I trust to do what I can’t, shouldn’t, mustn’t in a world they need to learn for themselves. Like a blessing, I picture it keeping them safe. My promise to that end — the heart that goes walking around outside my body — is that the gift of it is irrevocable. I’ve told my daughters over and over that there is nothing they can do to make me stop loving them. They’ve sometimes tested me on this, asking what if I do this or what if I do that, but I always answer, “I will always love you, even if I don’t love the things you do.”
Even if I die? they have never asked, but I do know the answer. Yes, even if you die. Continue Reading…
I hear my daughter Sammi’s steps on the stairs before her voice calls out to me. Still, I don’t run to unlock the door; she has keys, and my hands are covered in a sticky mass of egg and flakes of matzo meal. When I hear the key turn in the lock, I know what I’ll hear next and, still, it thrills me every time.
“Mommy!,” is the beginning and then, barely as that first word ends, the deep inhale begins, followed by, “Oooohhh! Really?!! Matzo ball soup!!! YES!!!”
This is my legacy, every bit of it, from the key in the door to the recognition of home to the smell of what’s cooking and what it means. This is how I want to be remembered.
Sammi has always loved soup. As a toddler, struggling to gain weight after her first cardiac surgery, she deigned to take tiny sips of a soup whose recipe I’d found in an old magazine and adapted. Chickpea soup became our savior, keeping her weight from dropping to the magically low number that would mean feeding tube. We spiked it with extra virgin coconut oil and kept a batch in the fridge at all times. It got so that I could not eat it myself, but never mind that — Sammi ate and did not wither, sipped and did not die.
When Sammi was only two, I brought a batch of that soup — a recipe I could make in my sleep and, half-crazed with insomnia in those years, often nearly did — to the home of parents who had just accepted two little boys as foster children. Sammi sat in her car seat as I hoisted the pot up the stairs and handed it over. There was, of course, another pot at home for her. These days, when I run into that other mother, she often mentions that soup, usually with the two words we use: “I made The Soup. Your soup. You know? The Soup.”
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…