Telling stories well is hard. Well, not always. Sometimes the essential story is clear, and I know before I start writing what the whole thing means, who and what the story is about, where it starts and where it ends. Then it’s easy.
Sometimes, I sit with the story for a long time, trying to figure out how to tell it, and then I know that I really don’t understand it myself. This is such a story, but I’m going to try telling it, and let it becomes clear in the telling; I’ve been sitting with it for a few weeks now.
So I guess I’ll just start at the beginning, which must be 1961, or something like that, because I know I was six years old. That’s when my aunt got married. Over the course of the 1960s, my aunt and uncle had three daughters. Because these three girls were, on average, about ten years younger than me, and weren’t boys, we were never close as kids. Even as adults, we have always been at different life stages, having young kids at different times, with other different things going on, so it hasn’t been easy to form close friendships; I have long wanted to.
The first cousin has had all the usual challenges in her life, and maybe a few extras, and she has done fine, but this story isn’t particularly about her. The second of these sisters had the extra challenge of seeing a child through a long life-threatening illness, which she and her husband managed with courage and fortitude, becoming heroes in the process. But this story also isn’t about them in particular. This story is about the third sister, Teri, her husband, Cliff, and their first daughter, Julia, who was born eleven years ago with multiple profound disabilities and life-threatening medical problems.
When Julia was born, the family lived in Manhattan, just uptown from Greenwich Village. Julia spent a long time — I think it was two years — in a hospital nearby. Teri abandoned her legal career as an SEC prosecutor, and spent every day at the hospital. Cliff was there every evening after his long days as a practicing attorney. The grandparents helped.
I have often thought of that time in their lives. It is a marvel how fiercely we love our children, from before the first time we even set eyes on them, how unquestioningly we cast everything else aside for them. There is a neighborhood I frequent in West Philadelphia, close to two major universities, and it is, of course, full of young people. There are students, graduate students, and young professionals. On a mild day, I sit outside the Greenline Cafe, opposite Clark Park, and watch lives unfolding, and there are many young couples, some pushing strollers or holding small hands, and the focus and pace of these lives are so different …
When a child is born, the parents’ world gets so small, but the future gets so big with possibility. What can it be like to have the future also get very small, hemmed in by disability and sickness? We feel it in the center of our chest, and it feels like a constricting band, a vise, squeezing our heart, like everything is getting small and closing in, but that’s not it, it’s our heart growing bigger, pushing out against the darkness.
When Julia was finally able to survive outside a hospital, her parents brought her home and moved to New Jersey, choosing a location close to the services that their daughter would need. Then they bought a home close to family and services and rebuilt it to accommodate a growing child who would never walk and would always need in-home medical care. They added two more girls to their family.
Julia never walked, never talked, never even ate; she was fed through a tube. She didn’t hear or see well, learned only within narrow constraints. She survived cancer, intestinal obstruction, and multiple infections. When she died last month, it was sudden, without explanation or reason. The nurse who monitored her at night found her breathless and pulseless, and began a successful resuscitation while sounding the alarm. But, as often happens after a successful resuscitation, the microscopic damage that was done to her organs cascaded, as dead cells poisoned the cells around them, causing organ after organ to shut down.
So far, I have written about what Julia could not do; I haven’t really touched on what she could do. But the sad truth is that I never had a very clear understanding of her abilities during her lifetime. I am shy and awkward around children, and a child like Julia was a great challenge for me, and my interactions with her were brief moments in crowded rooms at family gatherings; I never really pushed beyond my self-perceived limitations. Most of what I knew of Julia’s abilities was deduced from the devotion of her parents, grandparents, and closer relatives. (Note to self: push yourself more to know the people who make you feel awkward.)
Julia’s funeral wasn’t at all ordinary. The ritual and readings by the rabbi were very brief; the eulogies went on forever. The crowd was huge. Cliff wrote a eulogy that was presented by his brother. Teri wrote one that was presented by her sisters. The two little sisters gave one, and the first-cousins, as well. Then her school aid said a few words, and then her nurse.
So, I finally heard, in their own words, how stunned Cliff and Teri had been by their baby’s unimaginable difficulties, and how they had rallied and became a family. They wrote about how Julia formed varied relationships with different people, engaged others in play, and made her wants and preferences known. And everyone made clear how deeply Julia had touched their lives.
As I listened to people speak, I marveled at how intrinsic to us the capacity to love and inspire love is, how much of what we assume to be indispensable to our essence we can surrender without surrendering anything essential. And I continue to marvel at how big we can become when love and need send us beyond what we can imagine.
That Which Frees You
The bird that sings
The messenger skilled
in the language
of the unseen world
It is love that speaks to you,
calling you beyond the limits
of this created realm.
That which frees you
from your tiny self
also is love.
– Khaqani Shirwani
(translated by David Fideler and Sabrineh Fideler)