57 Fridays: Child Loss, Grief & Living with Dying

[Myra] I meet him in August 2006 in Hanover, New Hampshire. We stand in a circle in a parking lot next to the Dartmouth College soccer fields. I’m 18 years old preparing to leave my parents for the start of freshman year of college. It’s Varsity soccer preseason. I wear sweats with my right sweatpant hiked up to my knee like it had been before every soccer and basketball game in high school, and I anxiously await to introduce myself to my new teammates. Matt stands among a smattering of extras. High School boyfriends parents and siblings. He’s the older brother of my new teammate, Maggie, and I don’t even notice him. I’m too focused on this threshold moment, without any real appreciation for the power of presence, being where our feet are, and pace, taking our time, to let threshold moments come to life.

Five years later, I’m a recent college grad living in San Francisco. I’m on the phone with my mom. I call her to tell her that I’m going to see a movie with Matt, Maggie’s brother. I insist, we’re just friends. He’s a little too old, too handsome and too many degrees. Her long pause and okay sweetie suggest she thinks otherwise. We start the night at a West Portal bar watching the St. Louis Cardinals play the Texas Rangers in the 2011 World Series and then make our way to a cool little independent movie theater. Matt bought tickets to see Moneyball, about the joy and heartache that come with team sports, and we’re both hooked. Our arms touch but we don’t hold hands.

A lot happens between that October 2011 night and September 4th, 2016, our wedding date but in sum, a Philly girl and a Cali boy fall in love, move to Boston for Matt’s residency in Internal Medicine and start a life together.

Two years to the day of our wedding anniversary, September 4th, 2018, I’m standing at the end of a hospital bed with my hands wide on the frame and the contractions are massive now and then I can still see the clock to my left, it’s 12:28 p.m. and our baby daughter is born. Matt catches her, the nurse places her on my chest. We both cry. We can’t take our eyes off of her, she’s beautiful we name her Havi. Havi comes from the Hebrew root Chai which means life, and it sounds playful and light to us too. She’s perfect according to the nurses and midwife. Big eyes, clear skin, strong neck, our world is different now. It’s bigger, better and also sacred. Everything that matters is in this labor delivery room and I no longer exist just for me, but for the sake of another human being whose life I will sustain. I want to hug and kiss every mother who’s ever existed on this earth because motherhood seems like the most beautiful and daunting task. I’ve never felt at once so powerful and important and so scared and vulnerable all at the same time.

[Matt] It’s a few days before Havi’s first birthday. I’m mostly the cook in our house. I’m standing at the stove sautéing on onions. Autumn’s chill has shown up in Boston I’ve switched our summer menu to large pots of pasta. Myra’s sitting on the floor watching Havi crawl toward her reflection in the oven door she looks up at me, “It looks like she’s crawling through quicksand” she says “Crawling shouldn’t be this hard babe, I’m really worried something’s wrong.” I step away from the stove. I look down at her, “she’s making progress little by little every day she’s going to get there”. I try to reassure her.

At Havi’s one-year appointment with her pediatrician we receive a developmental delay diagnosis and for the next two months we’re in a diagnostic odyssey pursuing early intervention to try and bring Havi up to speed for where she should be. Just after Thanksgiving we get the devastating diagnosis that Havi has cerebral palsy. Devastating, but wrong. Two weeks later we find ourselves in the office of a pediatric neurologist at Boston Children’s named Dr. Sid. He examines Hav, orders a smattering of tests and an MRI. The next day December 17th, 2019 I’m in the elevator at Boston Children’s. I push the button for the 11th floor, the mechanical hum brings me upward, the doors open I walk to the nurses station, “I’m here to pick up a genetic test kit for my daughter Havi” I say. The nurse picks up the phone, punches a few numbers and speaks into the receiver. I turn and look around the waiting room at the children and their parents, each one a case study from my medical school textbook, The Pathologic Basis of Disease. Dr Sid appears in front of me, extends his hand and says, “Will you come to my office?”

He leads me down the hallway and things start to get blurry. I sit in a chair. He turns a computer screen toward me. It’s filled with MRI images of Havi’s brain. “Here, here, here” he says, “these lesions are characteristic of Tay-Sachs disease. Your daughter has Tay-Sachs disease she may only have 12 to 18 months to live. I’m so sorry.” Somehow I make it home. I open the front door and walk up the short flight of stairs to our bedroom. Myra’s on the phone. She drops it when she sees my face. I sit on the bed and recount to her what Dr. Sid had shared with me. She screams. She screams “she is going to die” over and over. I don’t know how we got here. Myra and I both had carrier screening for Tay-Sachs disease before Havi was even conceived. Myra was reported a carrier, I was not. Tay-Sachs is an autosomal recessive disease meaning each parent has to have one copy of the mutated gene in order to put the fetus at risk. We later learn that the physician who ordered my test ordered the wrong test and misreported my carrier status. That day December 17th, 2019, Myra is 11 weeks pregnant with our second daughter and the next afternoon we are in high-risk OB her getting a Chorionic Villus sampling a procedure like an amniocentesis to test whether the fetus is affected.

[Myra] “How do we do this? How do we watch our daughter die?” I shout at Matt as he drives familiar roads that now suddenly feel strange and unfamiliar. We’ve entered what Theologian Kate Bowler calls “apocalyptic time.” Apocalyptic from the Greek root to lay bear expose or reveal. And, it’s in this exposed state that we would need to find the courage, the conviction, the self trust to cross this newest threshold moment. I can’t wrap my head or heart around the fact that Havi’s going to have only two birthdays on this earth. So my mind races and I start talking out loud to Matt. “We could Honor Havi on Shabbat. Shabbat happens every Friday. Could we invite our people, Her people? Feature her favorite food: blueberries, cheesy eggs, avocado? Sing, dance, and not pretend the pain away but just celebrate the shit out of her?” Matt jumps in “like a combination of Shabbat and birthday. Like a Shabbirthday?” I laugh, it hurts. Shabbirthday, it’s tragically perfect. The next day we go to see a Rabbi. Lots of our friends had advised us to do this. We walk into her office, shattered. We tell her about our life, Havi’s life. Her fatal diagnosis and then with a glimmer of brightness we talk about Shabbirthdays and she looks at us and says “I don’t think you should do that. I don’t think you should do your Shabbirthdays. It’s going to be too painful to exist on Shabbat after Havi dies if you transform them in these ways. I think you should just live your life and take lots of pictures.” She defaults to protection and fear at the expense of presence and fullness. We walk out, get in the car, shut the door and I turn to Matt “that’s bullshit”, I say “we’re all in on Shabbirthdays”.

And, so 3 days after we learn that Havi has a year or so to live we celebrate her first Shabbirthday. Dozens of our people- her friends, family, aunts, uncles, cousins, grandparents descend on our home. She is showered with gifts: a plush toy avocado, a onesie, a warm challah, cake, balloons, an elegant gray dress with white leggings. She starts the evening making her way through heaping spoonfuls of sweet potatoes and then licking the frosting from her cake off of Matt’s finger. She vibrates in her chair kicking and squealing with enthusiasm and our home is full and warm. Everyone in it is full and warm. Nestled together in the flickering of the Shabbat candles and in Havi’s terminal illness. It’s like David Whelan in nature, the touchable rawness of life seeping into the bones of our home and Havi spends every minute in the arms or lap of someone who loves her.

[Matt] We have Havi for 13 months after her diagnosis and watched her lose everything in a way that is so characteristic of this horrible disease. We turn into, we lean into our grief in a way that allows us to embrace the full spectrum of life. We love deeply with one foot in the land of the living and the other in the land of the dying. We live with integration as opposed to disintegration. Dis meaning to cut away or exclude and when we disintegrate we literally run the risk of falling apart. Instead we lead with yearning, with craving. Importantly these are the opposite of fear. Fear is paralysis, but there is energy to yearning and we follow that energy into movement into community and into ritual in a way that sustains. Myra and I run together. She’s a lot faster than I am so it’s more like me running and her jogging. It’s the way we process, it’s where we process. We find rhythm in motion when the sound of our footsteps becomes part of nature’s heartbeat. That’s why we run for that feeling, for being part of something bigger, something greater. We know that in these spaces we feel closer to our people and I feel closer to Hav. Even though my feet are in the land of the living and her world, the land of the dying comes more alive for me on a trail through the woods or by the ocean. Nature helps, we know this lesson. It’s quiet, it’s non-judgmental, it doesn’t demand anything from us. In fact it invites us to breathe and connect with the universe that’s bigger than ourselves.

Havi eventually loses the ability to chew so we switch her blueberry pancakes into blended smoothies and nourish her for the remaining months, weeks, and days of her life. She loses the ability to see and we trust that she can feel our touch and that her stiff legs relax just a little when we smother her with love and eventually she becomes more and more still. We believe that she is cocooning. Not that she is any less of herself but that she is turning inward and transforming and that we are transfiguring with her. A physician friend of mine says you can do everything or you can do nothing. We opt for no medical interventions, no feeding tube, no swallow studies, no vision tests to establish new baselines that don’t matter,but we don’t do nothing, we do everything in a different way. We take her into nature to the sea to the mountains. We seek out sunsets and sunrises and we dance with her. Every night before bed Myra starts with her rendition of Have I Told You Lately How I Love You, and I tap in and finish with Eric Clapton’s You Look Wonderful Tonight. “Can I have just one more dance, just one more…”

[Myra] We’re living in what Friar Richard Rohr calls “deep time”, not longing or yearning for anything new or different but basking in the magic of pure presence. Just like our rabbis tell us to publicize our miracles like on Hanukkah when we light candles and put them in the windows for our neighbors to see. Shabbirthdays teach us that we can publicize our rawness, our fragility, our vulnerability, our impermanence in a way that lets us hold each other and hold Hav and honor the immeasurable pain and immeasurable beauty that comes with her life and death. “Pay Attention,” our grief therapist Dr. Joe implores us as Havi approaches her final days on this earth. She has now stopped eating or drinking. Attention, Mary Oliver says, is the beginning of devotion. Attention after all, what and who and how we choose to pay attention defines this shimmering existence, it defines our life, and damn am I glad am I grateful that I’m paying attention in this liminal space because what no one can rob me of what no one can rob us of is the beauty the bigness and the briefness of Havi’s life. Beautiful big and brief. That’s life. That’s all we get and we get all of that.

Havi dies on January 20th, 2021 three days after her 57th Shabbirthday. She dies on my chest and our bed with Matt’s arms wrapped around us both. We choose to keep her at home, watch as the essence of her departs from her body, and we visit with her on our terms. Eventually we bring her to a funeral home, kiss her cheeks a million times and in the greatest threshold moment of my life we walk away. And we lean on what works. Movement, the inherent regulating power of movement. Ritual – Suki Miller calls it the “antidote to helplessness”. And, community. Our lives, Hav’s life, is inextricably linked to the fragility of time, the bigness of unconditional love and the mystery of devastating loss. There is so much time, money, energy in this country spent on the Mental Health crisis and yet grief work, how we move with, how we inhabit, how we process grief is often not acknowledged. And, it is a cornerstone of mental and emotional health. And, in this way, grief work can be prevention work. If we learn a language of loss, if we learn to be self-aware enough to see the ways loss is centered in all of us, then we can develop the kind of emotional granularity being as specific as we can, as Dr Lisa Feldman Barrett’s research shows us, so that we know how we’re feeling. Then we can trust ourselves. We can dress up in psychological teflon and move in this world in a world that can sometimes be disorienting and harmful to grieving people, and then we connect with our community that we know is life sustaining. Our story, all of our stories, is a story about how to show up, how to take risks and big adventures and ultimately it’s a story about how to live right on the edge of this physical world and the mystical one just beyond it. Thank you. [Applause] [Music]