Jacqueline Dooley | Longreads | January 2018 | 20 minutes (5,067words)
In July 2016, when we got the results of my 15-year-old daughter’s CT scan, my friend Babs introduced me to a new term: “anticipatory grief.” The scan showed that tumors in Ana’s lungs were noticeably larger than they’d been three months earlier, and masses in her abdomen had multiplied. Having been through this eight years earlier with her then 16-year-old son, Killian, Babs recognized that what we were dealing with wasn’t just a bad scan. It was a turning point in Ana’s disease — the Inflammatory Myofibroblastic Tumor, a rare form of pediatric cancer, she’d been diagnosed with four years earlier.
Medicinenet.com defines anticipatory grief as “the normal mourning that occurs when a patient or family is expecting a death.” As if there was anything normal about preparing to mourn my child’s death.
I didn’t like the term. I wasn’t ready to start grieving.
Babs suggested I reach out to a local hospice organization. I recoiled at the thought. Ana looked and felt good. I was sure her oncologist would find a drug to slow her progression until some miracle of modern medicine revealed a cure. It seemed impossible that Ana would die. I had no frame of reference or spiritual foundation for the enormity of that kind of loss.
Ana’s oncologist switched her to a new medication, but made it clear that this likely would only slow things down. Although it was disappointing, we still had hope. Ana glowed with health, at least outwardly. Maybe this new treatment would work better than the others had. Maybe.
I was raised as a secular Jew, with no belief in God or religious tradition beyond celebrating holidays like Chanukah and Rosh Hashanah. It didn’t matter, not back then, because holidays were about family rituals, not religion. I was lucky. I didn’t know anyone who died until my great-grandmother did, when l was 14. I wasn’t close with her at all, and I experienced no other major losses in my childhood.
My first significant experience of unexpected loss came when my 27-year-old cousin, Laura, died of breast cancer. I was 18 at the time and had always adored my cousin, though I didn’t see her much more than once or twice a year. Laura was being treated in Boston and I lived about four hours away in New York. I didn’t fully understand how sick she was, but in the midst of my transition from high school to college, after seeing a certain look in my mother’s eyes that I hadn’t seen before, I decided to travel to Boston with my parents to visit Laura. I knew I had to go.
I spent a few days with her. I asked about her hair. How had it fallen out? She told me it was slow at first, just some strands on her pillow or in the shower. Then she’d cut her long, dark hair short and after that it came out in clumps until there was nothing left.
She pointed to a tumor bulging under her skin near her collarbone, a tiny hard sphere, and asked me if I wanted to touch it. The idea was terrifying, but I’d said yes. I’d understood, somehow, that she needed me to feel the evidence of her disease. We went out only once during our visit, and she wore a wig, annoyed when a woman complimented her on her beautiful hair. I could tell she was lonely, and that frightened me most of all.
Medicinenet.com defines anticipatory grief as ‘the normal mourning that occurs when a patient or family is expecting a death.’ As if there was anything normal about preparing to mourn my child’s death.
Although I was only 18, I recognized that she needed me to listen and not dispense advice. She had no time or patience for my fear. She had a level, feverish gaze that tolerated zero bullshit. I tried to be present for her — at least, that’s how I remember it — even though I felt helpless and sad. I’ve since wondered if this was an oddly prescient way for Laura to teach me what Ana would need twenty years in the future. Laura died a few weeks after that visit.
When I was 28, my uncle’s esophageal cancer advanced and he became terminal. Diagnosed at age 45, he’d been sick off and on for about four years. Throat cancer is awful, robbing the victim of the ability to eat and speak. My uncle wasted away. He was angry, just as Laura had been. “I look like a concentration camp victim,” he said when I visited him. His words would haunt me years later, as Ana grew thinner and thinner in the last year of her life.
I was the only one in the room with my uncle when he died. I’d driven a few hours to sit with him in a hospice ward.
When I arrived, his girlfriend was with him. She’d asked me if I would stay with him so she could get a few hours of sleep. I told her to go home and get some rest, that I was prepared to stay with him through the night.
After she left, I listened to his labored breathing. I studied his diminished body beneath the thin hospital blanket and something possessed me to say the words, “It’s okay to go.” I’d had a feeling that he had been hanging on for her, trying to spare her more agony. He died within minutes after I spoke.
I’ve never regretted being there for my uncle during the moment of his death, but I was never grateful for that experience — not ever — until my child went from having a life-threatening illness to being terminally ill.
So, at first, it was Babs, with her careful suggestion that I reach out to hospice, who made me contemplate the possibility that Ana wouldn’t get better. Then it was Ana’s oncologist, who quietly suggested we reach out to the palliative care team at the hospital. And, finally, it was Ana herself. By August of 2016 she’d begun showing symptoms, at last, of the growing tumor in her right lung. She was pale, tired, and breathless.
I recalled how emotionally unprepared I’d been when my cousin and uncle died. Their anger and loneliness haunted me. I wasn’t there for them, not really. I was too wrapped up in my own uncertainty and fear of death to be fully present for them. I could’ve listened more. I could’ve eased their loneliness — not completely, but enough so that they’d have felt my unwavering presence during their transitions from life to death.
“Did you ever see anyone die?” Babs asked me once. I hadn’t thought about my uncle’s death in many years.
“Yes,” I said. “I was there with my uncle.” Babs was my lightkeeper, telling me — without saying it too bluntly — that I needed to be prepared.
As Ana’s mother, it was now my job to help her move from life to death as peacefully as possible. I could only do that with knowledge and acceptance I had yet to muster. With this realization, I began what I came to see as my transition from earthly mothering to spiritual mothering.
There were many heartbreaking realities to face — and impossible decisions to make — once I acknowledged the awful truth that Ana’s cancer was terminal.
Ana rarely talked about her fear of dying, but she had once told me she hated the thought of me standing over her and sobbing as she died. Her confession finally made it clear to me that I’d need to have my own feelings under control and gain an understanding of death so I wouldn’t be too frightened to help Ana when she needed me.
I cannot understate the importance of acceptance. For years, I had not truly believed her disease would kill her. I’d convinced myself through hope and denial, that somehow she would survive. Once I accepted that she was going to die, it removed the barrier of denial and enabled me to ask critical questions I’d been avoiding, such as:
Should we put a Do Not Resuscitate (DNR) order in place?
Did Ana want to die at home?
What did she want to focus on in lieu of school (or did she still want to go to school)?
Was it truly possible to control her pain?
What symptoms could we expect as her disease advanced?
And, hardest of all, we needed to understand: How — exactly — would she die?
This last question was so important because some symptoms cannot be managed at home. A hospital admission at this late stage of Ana’s disease meant she might never be discharged again. The thought of traveling to the hospital, of disappearing into those antiseptic hallways with their unforgiving fluorescent light, only to emerge without her, was unbearable.
I recalled how emotionally unprepared I’d been when my cousin and uncle died. I was too wrapped up in my own uncertainty and fear of death to be fully present for them.
There was no way for Ana’s oncologist to know exactly how the cancer would ultimately kill her. She had tumors in her abdomen, pelvis, bowel, and lungs — all of which were growing. Her doctor reluctantly predicted (when pressed) that her lungs would likely fail due to the large tumor load. Her breathing would worsen, her oxygen levels would diminish, and she would fall into unconsciousness and not wake up.
And, in fact, this is exactly what happened. When we had this conversation, many months before Ana died, this scenario seemed impossibly remote. I still believed her doctor might swoop in with a cure at the very last hour. I could not wrap my mind around losing my daughter. But, I wanted to be as prepared as possible. I wanted — needed — to support her fully through whatever hell was coming.
Ana was a smart, determined 15-year-old girl, but she wasn’t an adult. My husband and I had to address all of the above questions while being careful not to scare her or shut her down. It was a delicate balance that we navigated with very little guidance — at least, at first.
Some decisions were easy to make. Ana hated the hospital and, though she didn’t expressly say it, she wanted to die at home. She had another bad scan in September of 2016. The tumors in her lungs were growing. The tumors in her abdomen were multiplying. She started tenth grade that month — happy and excited. That was also the month we admitted her to hospice.
We have a little-known provision of the Affordable Care Act, Section 2302, to thank for Ana’s access to hospice and palliative care while simultaneously retaining her oncology care team. Without this provision, we may have been forced to stop her chemotherapy sooner. But she remained on oral chemotherapy while getting regular home visits from a local hospice nurse for five months — five months I will always be thankful for.
Section 2302 applies to children enrolled in Medicaid or CHIP programs. Ana was insured via New York’s Child Health Plus program which is our state’s version of CHIP. It requires that children aged 21 and under may receive curative treatment at the same time as they are receiving palliative (symptom-based) care. End-of-life care is what enabled us to help Ana die the way she wanted to, with minimal pain and at home.
According to a recent Time article by Dr. Elisha Waldman, the palliative care specialist that treated Ana, Section 2302 could be in jeopardy if the ACA is repealed. This would force parents of critically ill children to choose between continuing curative treatment and stopping treatment in order to gain access to the kind of end-of-life care that enabled Ana to die peacefully at home.
In January 2017, another scan showed that Ana’s left lung had collapsed. At this point, she was dangerously anemic, exhausted, and extremely short of breath. By early February, she stopped going to school. The January scan would be her last.
I had maintained some level of hope that Ana’s progression would be slow and another breakthrough drug would be discovered in time to save her life. When it became clear that wasn’t going to happen, I started reading — in earnest — about death and dying.
As I mentioned above, I had no religious foundation to provide comfort and guidance. I had no spiritual guide (pastor, rabbi, priest…) and no congregation to hold me up. But I did believe in certain things — that we all have a soul, that death isn’t the end, that some of us are reborn and that Ana might, in this way, continue to exist even after she died.
I read passages from The Tibetan Book of Living and Dying by Sogyal Rinpoche and felt comforted by the directness of the text. Here was a book about death and dying, written from a place of joy. This book normalized death in a way that helped me breathe. It helped me realize I couldn’t stop what was coming, but I could probably make it a little easier for Ana.
I read Being Mortal: Medicine and What Matters in the End by Atul Gawande, which reinforced my determination to keep Ana out of the hospital. This book clarified how little we deal with death and dying in our culture. In avoiding this inevitable topic, we do ourselves and our loved ones a disservice. I realized I had to stay calm and focused — no matter what — if I had any chance of helping Ana die peacefully at home.
As Ana’s mother, it was now my job to help her move from life to death as peacefully as possible. I could only do that with knowledge and acceptance I had yet to muster.
Ultimately, books weren’t enough. I needed people to guide me. I reached out for help and found my light keepers, the people who held me up during what would be the hardest thing I’d ever have to do as Ana’s mother.
It was my job to think (and worry) about the end of life details, so that Ana didn’t have to. She wasn’t a young child, but she needed mothering now more than ever. This was no time to retreat.
Ana had made it clear to me that she didn’t want to think about too many specifics regarding her death — the prospect of dying was frightening and stressful. Still, I wanted to make sure her wishes would be honored in every way possible. When I tried to bring up topics like a memorial service or a list of things she’d like people to have, she got angry and upset.
At one point, a hospital social worker gave us a booklet called, Voicing My Choices: A Planning Guide for Adolescents & Young Adults. Developed by the National Institutes of Health (NIH), the booklet states it is, “the first guide designed to help adolescents and young adults express how they would like to be comforted, supported, and cared for in the course of serious illness, and how they would like to be remembered if they do not survive.” Ana wanted nothing to do with it.
When Ana stopped treatment in January, her oncologist’s role changed. He continued answering medical questions and prescribing palliative medications, but he could not answer the new breed of theoretical questions I now had. What did other parents do when their teenager woke up in the middle of the night terrified that dying would hurt? Was I giving Ana false hope when I told her we could visit a college she was interested in? Should I force things like food and oxygen when they upset her?
Hospice couldn’t answer these questions either. The program was very helpful to us for certain things like managing medication, but the nurses had no experience with terminally ill teenagers. It was an entirely different kind of doctor that became my mentor and guide during the harrowing and heartbreaking final months of Ana’s life.
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During this time, Dr. Elisha Waldman was the Director of Pediatric Palliative Care at Morgan Stanley Children’s Hospital in Manhattan. I’d started corresponding with Dr. Waldman in June 2016 after a CT scan showed aggressive progression of tumors in Ana’s abdomen. My focus, even that early on, was to try and understand how the cancer could potentially kill Ana. What would happen? How much pain would she be in? Above all, how could I help her stay comfortable and remain at home?
Dr. Waldman had earned a B.A. in Religious Studies before going on to earn his medical degree as a pediatric hematologist-oncologist. He’d been a practicing oncologist for years, living in Israel and treating both Palestinian and Israeli children at Hadassah Medical Center in Jerusalem. He then went on to complete an additional fellowship in pediatric hospice and palliative medicine at Dana Farber Cancer Institute/Children’s Hospital in Boston.
Here was a man who had a background in religious studies and an expertise in pediatric oncology. Yet, he had chosen to focus not on treating children with cancer, but on providing palliative care and relief to those children — like Ana — whose treatment had failed.
In July, I’d sent him an email tense with worry, writing, “I don’t want to force Ana to confront her own mortality before she’s ready, but I’m afraid I’m giving her false hope.”
That I would hope for a peaceful death for my child was a profoundly clarifying moment in transitioning from earthly parenting to spiritual parenting. I had fully accepted that she wasn’t going to get better but, nevertheless, I was still mothering her.
“One of the most wonderful and amazing attributes of the human soul is the near impossibility of crushing all hope. This is a gift. I don’t know if it’s God, or nature, or evolution, nor do I care — it is a beautiful and vital part of what makes us human. We have actual published data that people (patients and parents alike) can (and want to) hear frank, stark information about their prognosis, are able to internalize the fact that they are going to die of their disease, and yet still simultaneously maintain some sort of hope. The ability to simultaneously grasp one’s own mortality while still hoping for something is one of the beautiful paradoxes that makes us human and that allows us to function.”
Months later, I would write him again, concerned with Ana’s rapidly dwindling appetite, her increased abdominal pain and profound fatigue. Dr. Waldman’s willingness to answer my questions via phone, email, and text is what carried me through the last couple of weeks of Ana’s life. He was the mentor I needed.
But he wasn’t the only one. I am friends with several bereaved parents who became additional guides, answering the hardest question of all. “How, exactly, did your child die?” I was terrified that Ana would suffer intractable pain in the last weeks and though their answers weren’t always comforting, they provided tangible context around the dying process.
I found myself hoping that she would go to sleep and her heart would stop, sparing her from another hospitalization and potential agony.
That I would hope for a peaceful death for my child was a profoundly clarifying moment in transitioning from earthly parenting to spiritual parenting. I had fully accepted that she wasn’t going to get better but, nevertheless, I was still mothering her.
In the last week of Ana’s life, I texted Dr. Waldman multiple times per day. He nearly drove to my house (two hours from the hospital) with his team, but I told him not to. I realized there wasn’t anything else he could do to help. It was all up to Ana now.
She remained lucid until the day before she died when she slipped into unconsciousness. She glanced up one last time to look at me and my husband before taking her final breath. Her body was gone, but her spirit was everywhere.
In the wake of Ana’s death, it was now up to me to figure out how to survive the crushing grief of losing her. Somehow, I needed to continue being her mother. But how?
In those early days of grief, I functioned within a haze of shock and disbelief. It’s difficult for me to reflect now — nine months later — on anything specific. I remember visitors bringing food, messages on Facebook, and condolence cards arriving daily.
None of what I’d learned about the dying process had prepared me for the aftermath of losing Ana. Even now there are days when I can barely stand to be alive without her. My longing is relentless. When I’m at my lowest, I feel a physical dread that manifests as pressure around my head and my heart.
For me, there is no denying death, not anymore, not ever again. In his book, The Spiritual Lives of Bereaved Parents, Dr. Dennis Klass writes, “Parental bereavement is a permanent condition.” I understood, as any parent who loses a child does, that the grief would last a lifetime. Klass writes, “Because contemporary culture does not easily include the idea of irreparable loss, it is very difficult for contemporary bereaved parents to use the spiritual frameworks in which humans have cast their grief for most of human history.”
Klass wrote his book nearly twenty years ago, but his observation about contemporary culture having absolutely no spiritual framework for this kind of catastrophic loss resonated with me. I’ve been blessed with a strong support system and, to date, no one has urged me to move on with my life, to heal, to “get over it.” Even so, after the initial few weeks of outreach and condolences were over, my family was left to try and carry on without Ana.
We had her cremated. Her ashes, secure in an unmarked black box, arrived about two weeks after our agonizing visit to the funeral home the morning after she died. I put them in her room beside a collection of gemstones she’d cherished. The box was all wrong — featureless, anonymous, and far too stark a vessel to house the precious contents inside. My husband and I were working with a local potter to create a custom urn, but it wouldn’t be ready for about six weeks. When it finally arrived, I breathed a sigh of relief.
Ana would’ve approved of the urn, made from creamy white clay with a hummingbird painted on one side and a small piece of celestite (a sky-blue gemstone) glued to the lid.
What do you do when your child dies and you don’t believe in god or heaven? She is gone, but where has she gone? I could not accept that there was nothing left of her but memories and ash. Her spirit was larger than this, her presence felt alive all around me. I longed to reach her, so I started looking for signs that her spirit was near.
I needed solace. Dwelling on the final moments of her life, longing to relive the past, and mourning the future was creating a trifecta of pain. Signs became a way to connect with Ana that offered up a potential escape from my desolation.
The first sign was a stone I found under my bed. A glistening, tumbled opal that had fallen there on some forgotten day. I knew it was from Ana’s collection, but I can’t remember bringing it into my room. I dropped my reading glasses and when I peered into the murk to find them, a shimmer of light caught my eye. I took the stone and thanked Ana, feeling foolish and grateful.
The next sign was a silver ring that I found on the floor, also beside my bed. I confirmed with my younger daughter that it was Ana’s. It fit me perfectly even though her fingers were much slimmer than mine. It has remained on my finger for months, becoming an object that links me to Ana, an item that bridges the space between the earthly world where I reside and the spiritual world where Ana exists.
In the wake of Ana’s death, it was up to me to figure out how to survive the crushing grief of losing her. Somehow, I needed to continue being her mother. But how?
I became obsessed with identifying other signs — feathers, stones, coins, and jewelry seem to be the prevailing signs that deceased loved ones leave in our path. I became obsessed with hummingbirds, in particular. Ana had wanted to get a hummingbird tattoo — a wish I’d nearly granted, but her white blood cell count was so low that we felt it was too risky. What if it got infected? What if it never healed? I don’t know why she wanted a her tattoo to depict a hummingbird. I think it might have had to do with her knowing I liked them, but I don’t know whether that’s a false memory. Or maybe she just liked the way they looked. I wish I knew. The hummingbird painted on her urn is a replica of the tattoo she would’ve gotten.
A friend gifted me with a hummingbird feeder and another friend gave me tips on how to attract them to the yard. By mid-July, they began appearing. They remained all summer, a family of four. Ana would’ve loved the birds. When I sit outside and watch them at the feeders (I now have two), I feel close to her. Time slows to a crawl when you’re waiting for birds to appear at the feeders and that’s fine by me right now. I learned how to use Ana’s camera. We’d bought it for her three months before she died and she’d barely used it. I now have a gallery full of hummingbirds, downy woodpeckers, cardinals, titmice, and blue jays.
I’m still mothering in the present even though Ana is gone, but I’m navigating a treacherous path. If I try to hold onto Ana as she was — my vibrant daughter: smart, funny, talented, just two months shy of turning 16 — then I will lose myself to grief. I will sink into it and never emerge.
One dismal afternoon when I was feeling particularly sad, my friend Laura mentioned a medium named Armand Egidi. Laura, whose 9-year-old son had died six weeks before Ana, had heard about Armand in a parental bereavement group on Facebook. Laura lives in Florida but saw that Armand lived in New Jersey.
I hadn’t thought of visiting a medium until that moment. I was still researching signs and trying to figure out how to connect with Ana when Laura suggested I give Armand a call. By the end of the day, I’d made an appointment to see him. Two weeks later, I found myself in his gorgeous meditation space with a fluttery feeling of anticipation in my stomach. Was I finally going to hear from Ana?
I had never seen a psychic or a medium in my life. I had no idea what to expect. I felt desperate and more than a little foolish. I hadn’t mentioned that I was going to see Armand to anyone except my husband and one friend who I’d dragged with me on the trip. Armand knew I’d lost my daughter, but he didn’t know anything else about me or Ana (unless, of course, he’d decided to Google me, but I tried to check my skepticism at the door).
I don’t know if months of studying death, followed by a near obsession with reading about signs and the afterlife inured me to the few, admittedly, uncanny things that Armand had to say about Ana (or, if I’m going to be accurate, she had to say through Armand), but I was disappointed. Armand got a lot of things wrong, which I assume is the way these things go, but I have nothing to compare this experience to.
There were, however, a few glimmers of prescience that I haven’t been able to shake. He mentioned that Ana loved to sing (she did) and that she was surrounded by music (although, both facts are easily verifiable by spending 30 seconds my blog). When I asked about my younger daughter he mentioned the color purple (purple is my younger daughter’s favorite color). He told me that Ana was showing him a red heart. “I’ve been drawing hearts on her chalkboard wall since she died, some of them are red,” I explained.
“Ah yes,” Armand nodded.
“Red hearts are hardly an original sign,” I thought to myself, hating that it was so difficult for me to have faith in Armand’s words when I wanted so much to believe. When I got home, I remembered that I had purchased a red sandstone tea light holder in the shape of a heart after Ana had died. I’d gotten it within weeks after her death, barely holding back tears as I paid for it. I was, in that moment, buying it for her even though she had died.
What do you do when your child dies and you don’t believe in god or heaven? She is gone, but where has she gone? I could not accept that there was nothing left of her but memories and ash.
And, the most meaningful communication of all: Armand mentioned that Ana had shown him a blue jay. This was relevant because about six weeks after Ana died I had begun going on long walks and looking for feathers. One day, I asked Ana for a blue feather. I said the words aloud, staring up into the sky (feeling more than a little crazy). I hadn’t found a feather on my three-mile walk, but when I arrived home there was a blue jay feather in my driveway.
I’m not sure I was ready to visit Armand when I did. Even now, I struggle to make sense of what I really believe in versus what I want to believe in. There is a yammering voice of doubt deep inside me that I have been unable to silence. Each sign, each synchronicity, each incredible coincidence that lifts me up, also has the power to send me spiraling into despair. Because, what if there are no signs? What if there’s nothing?
Ana was my baby. I remember every version of her — every milestone, every growth spurt, every Christmas morning, and Halloween night.
She is, at once, a round-cheeked baby learning to walk. She is the shy first-grader who used to sing with her hands in front of her mouth. She is 11 and stoic, having just been diagnosed with cancer. She is 13 and fierce, determined to learn guitar and break away from me. She is 15 and dying.
When someone you know dies, you think of them, you miss them and you get on with your life. But when your child dies, there is no distinction from your self and their self. You see, I am never not thinking about Ana. Her essence had become wholly part of my own identity before she died, as tends to happen with parenting, but because she didn’t finish growing up, the normal separation between our connected selves didn’t happen.
She is still with me. The signs that she’s all around me are more than wishful thinking. They’re more than coincidence. My faith that Ana’s soul has survived, and that her spirit exists in a new way, allows me to keep mothering her.
* * *
Jacqueline Dooley is a writer and entrepreneur living in New York’s mid-Hudson Valley. Her essays on parenting a child with cancer and parental grief have appeared in The Washington Post, The Huffington Post, Pulsevoices.org, GoodHousekeeping.com and Modern Loss. She blogs about parental grief at www.thehalfwaypath.com.
Editor: Sari Botton