My mother passed on my 50th birthday, a casualty of breast cancer. She had been planning my birthday celebration. Instead we gathered for her funeral, a celebration of her life as Dakota language advocate, educator, and cherished relative.
In that quiet moment, as she crossed the river to the other side, I was grateful to help her begin her sacred journey. We were together on February 25, 1963, the day of my birth, and we were together on February 25, 2013, the day of her rebirth. Her earthly body returned to our earth mother, and her soul returned to Wakan Tanka — the great mystery. Our relative’s love never ends, and their spirits and energy become our spiritual helpers, our allies in prayer.
My daughter went into labor with my fourth grandchild on February 25, 2019. Coincidence, maybe. But blessed, definitely.
When I moved from adult, to pediatric, to neonatal (newborn) nursing, I knew my skill set would change. Neonatal medicine is not adult medicine in smaller sizes. It is its own practice, with its own diseases, treatments, and challenges. Our jobs are different every day.
Some days we witness the best: the birth of someone’s healthy child. Some days we stabilize a premature newborn. Some days we save a life. Some days we witness the worst: the day someone’s newborn child dies.
For those families, a new baby is not filled with possibilities and a bright future. The life that has been given to them has limitations. Whether it’s a chromosomal abnormality, a physical anomaly, or a tragedy suffered during birth, some babies do not go home.
For those, a new baby is filled with difficult decisions, heartbreak, and sorrow. They spend their lives in a hospital, connected to continuous monitoring and medical devices that keep their heart beating, their lungs breathing, and their organs perfused.
Each moment is treasured. For some, birthdays are celebrated weekly, or monthly. The lucky are given a year.
These babies are cared for by nurses, doctors, and specialists who, despite best efforts, cannot change the outcome. It is our job to learn how to turn a terrible outcome into a more positive experience. Even if we cannot send a healthy child home, our job is to make the most of a family’s time together, to make memories that will last their own lifetimes.
We can meet the basic needs of an infant and keep the baby comfortable. We can recommend services, such as Now I Lay Me Down to Sleep, which provides remembrance photos, taken by volunteer professional photographers.
The statistics might not seem like a high number, until it happens to you, or someone you know: 10 percent of babies need medical intervention following delivery, 2 percent require ongoing medical care and admission to a neonatal intensive care unit.
I started my career in adult oncology in the 1980s. At that time, in that part of the country, hospice was a new concept and was reserved for older adults with terminal illnesses. Home hospice had yet to evolve. I was honored then to witness, console, and care for people as they passed from this world.
I am just as honored today to be part of a team that supports families during the loss of their baby. I have a tattoo that reads: “Don’t blink.” It is my reminder every day to cherish my loved ones, hold on to our moments together, and look forward to another day together.
Grief does not get ‘better’ over time. It gets different.
Five years ago, my friend of 25 years died of suicide. The morning I got the call, the whole world went silent and still and stayed that way. The abrupt cutting of one of the strongest threads in the tapestry of my life shattered the fabric. The pain of missing her is ever-present. The instinct to leap to her defense, to list off the things she was suffering — all the pain, the doctors, the years of sleeplessness, how hard she tried — is embedded in my DNA.
One of the most common and hateful responses to her death is “What a selfish thing to do.”
I have suffered all my life from depression, as many of us do. When you have stood at the edge of that grey abyss — that empty, exhausting, uphill battle, again and again, you understand. This has nothing to do with the others in your life. It is a sense of ‘I am done, I simply can’t go on.’ I understand, and it shatters my heart every day. I create elaborate plans to go back in time and save her. I write her messages when I need her. No, I will never be ‘over that.’
In the Victorian era, people dressed in mourning for a year after someone died. After my brother’s memorial, I was back to work a day later. That loss is coming up on three years and I am only now starting to remember to breathe. The day of the memorial, a man screamed at me because we were two minutes late getting him into his audition. I stood so apart from him, in this suspended state of grey numbness. He was angry. I was dead inside. How many times did I wish I could wear black as a symbol to others so they would know I am not in this world, but living in a searing hell of pain.
Grief becomes part of you, like an unplanned lodger in your home, sometimes showing up when you least expect it. It is always present, and you have to negotiate the terms of an uncomfortable relationship.
When my sons were three and six, I faced a breast cancer diagnosis. I felt like I had fallen down a deep dark hole with no ladder to climb out. My confidence in motherhood was gone. How do you explain cancer to your young children while you’re fighting the hardest physical battle of your life? My breasts had nurtured my two babies, defined my femininity, and now they were gone. I felt like I had been stripped of my powers.
I also was at a loss about how to help them through this journey called cancer. I went to the library and looked for an age-appropriate book that explained the basics of cancer — one that instilled hope. I never found that book, so I wrote one myself.
I developed a garden theme while explaining each step of my surgeries and treatments to my sons. I told them cancer is a bad weed in my garden. It has been five years since I published “Our Mama Is a Beautiful Garden” to help families start a discussion on the topic of cancer.
I’ve had my share of losses — the ending of things. As a teenager, I moved from one country to another, crossing cultures and languages that didn’t share any roots with my childhood. There was a wrenching divorce, and the death of family members and close friends.
It was the death of my beloved partner of 30 years that cracked me open deep and wide. When his body extinguished, my animal body understood its own predicament in its primal way: This will happen to this body too. The reality of his end impelled me to face my own mortality with new intimacy and intensity.
I do not know how and when I will die. I eventually embraced not knowing. It paradoxically led me to an ongoing curiosity and participation with living in the present. It brought my priorities and values into sharp focus. It awakened me to ask every morning, what really matters to me about how I live today?
Awakening to the inevitable changes and ending of things, we appreciate how fragile and precious life is. It heightens our sense of aliveness and joy in small everyday encounters. When we die, what matters is how well we loved. How well did we dive into life without holding back?
When we show up to our fleeting moment with love, we touch something timeless. The biggest gift in facing death is to know that when we die, love does not die, because love does not belong to us. Rather, we belong to love —eternal, unbound love.
As a 20-year-old college student, I attended a Sunday morning talk at the UU Fellowship in La Crosse by death doula Jackie Yaeger. (See her story that follows.) I expected to learn philosophically about the process of dying. Instead, she focused on the beauty of dying, and how it is often erased from conversation.
I think of how it might be when I lose my grandparents, my parents, and other elders in my life. I have not thought about my own mortality. This is not surprising for people my age. We tend to live life not feeling any threat of death. It’s all about future goals.
Yaeger emphasized how easily forgotten the fact and the art of dying is. She said, “Not everyone will give birth, but everyone will die.”
My breath, in a room of middle-aged couples and retirees, tensed up. We treat dying as something to be feared, a future step to ignore until it happens, but listening to Yaeger made me question why. Death is not cold or unwilling. It is completion.
Death is considered a medical experience, yet it should be treated as a passageway. Death is a process that many people, unfortunately, are afraid to embrace.
I have no idea what happens after death. The older I get, the less I know. I do not spend time considering where I was before I was born, so when I am dying, do I really need to ponder where I will be after I die?
Yet, I do know how to help people find meaning as they are approaching death. As a death doula, I conduct a “dying time care plan,” which is similar to a birth plan. The action steps refer to how we will get from where we are right now to where we want to be during our dying time, from a spiritual, emotional, psychological, and physical standpoint. I also do a Life Review, by asking what your life was like. What were the fun times? What were the sad times? What are action steps you can make towards forgiveness?
When we face death head on, it helps us realize that we have one life to live fully, according to our values, starting today.
Twice I was told I would die from a Stage 4 cancer diagnosis. After I survived both experiences, I changed my career focus to work with people who have life-threatening and terminal disease. I have assisted many people who are preparing to die — helping them face their fears and come to terms with death. I have witnessed how death can be a healing experience for the individual and their loved ones.
Through a Bush Fellowship, I am now learning end-of-life traditions from diverse cultural, religious, and spiritual perspectives. I have found commonalties among belief systems, but what I have found most captivating and challenging is the huge diversity in end-of-life beliefs and responses as death approaches. Every person I talk with starts off saying, “I can only speak for myself.” They described their beliefs — Christian, Buddhist, Agnostic,
Wiccan, Hindu — but were clear that the general beliefs of the organized religion they might belong to were not exactly what they personally believe.
What I have found to be critically important is to ask what the individual believes and what they want/need as they approach end-of-life. This is why I am passionate about each of us understanding first our own belief system, how it has evolved over time, and that it will continue to do so as we have more experiences that broaden our understanding. If we can recognize that our beliefs have changed over time, we can accept that there is not a right or
wrong way to believe.
In India, for example, there tends to be a belief of death as a transition — every person has a role to help the dying individual reincarnate into their next lifetime in the best way possible. Witnessing this was a profound experience for me.
When I was 46, my dad was close to death. He was in and out of consciousness. I was reeling from the memories of sexual abuse at his hand, and I wasn’t sure how to work with this in a healthy way.
I was referred by a friend to a woman who facilitated family healing, who helped me to realize that I had lived in a chaotic, confusing home. The healing I received was pivotal in my ability to compassionately forgive my father. As I drove the four hours to the hospital, I wrote a song that I sang to him at the hospital, to let him know that I remembered, and that I forgave him.
As my father moved toward the end of his life, I said prayers to release my anger and resentment. I talked with my spiritual family, worked with radical forgiveness methodologies, played piano, received energy healings and acupuncture, and did ceremonies with my drum near the river. Each of these experiences helped me let go of the residual suffering.
In December 2004, we were called to the hospital, where my father’s mother was instrumental in making the decision to release him. They removed the respirator. A pastor came in to offer prayers.
I allowed my spirit to guide me as I stood with my family and next to my father at the head of his bed. I whispered that it was okay to let go. I told him that he was safe and that there would be guides to assist him on his journey.
It took less than an hour for him to take his last breath. There was silence and a time to grieve. We left in tears. It was an incredible journey of releasing the physical body.
When my father’s family and friends got together, they talked about his positive outlook on life and how he always made people feel better. As they spoke, I kept remembering the damage that had occurred because he chose to use his power over me. It seemed surreal, like a movie playing in slow motion. I didn’t have much connection to grief or sadness, just a numbing sensation.
My real struggle began after the funeral. Although I was able to be with my father in a compassionate way at his death, my body would not let me forget that there was more healing to do. I experienced congested sinuses, chronic sore throats, clogged ears, and headaches.
A body worker helped me process the emotions that I repressed and the grief that I desperately sought to avoid. It was my vow about living and dying with no regrets that guided me through the challenges of my father’s death and the healing that followed.
My father and I didn’t have an opportunity to discuss what had happened, or to process my emotions about the abuse before he died, but I did have time to do my own healing. At the end of his life, the truth set me free.