“Grief is in two parts. The first is loss. The second is the remaking of life.” ~Anne Roiphe

Mom and I at a butterfly garden.

You know how we always ask little kids “what do you want to be when you grow up?”? Responses tend to be along the human service spectrum – doctor, lawyer, teacher—on the adventurous spectrum – astronaut, cave diver, actor or singer—or on the fantastical spectrum—a mermaid, unicorn trainer, or alien hunter. I don’t exactly remember what five-year-old me answered when asked that question, but I am almost certain it wasn’t “end-of-life doula.”

Yet here I am. Having led a life that makes me no stranger to death, I find myself in a place of readiness to journey alongside others as they navigate a path that I have been on before with my own loved ones. It wasn’t until now, nearly five years after the last significant death in my life (so far), that I have found that I can take the grief I carry, the lessons I’ve learned, and the memories of my loved ones and use them to bring compassion and tenderness to the final transition in life that no one can avoid: death.

Death can be quick and unexpected, like a heart attack or car accident, or it can be a little more drawn out-days, weeks, months, maybe even years, due to illness or simply age. I have experienced both kinds. I lost my dad when I was seven years old to a heart attack. He simply did not wake up one morning. My mom and I weren’t even home with him-she and I had traveled to visit her mom, my Nana. We got the phone call from his close friend and colleague that he didn’t come to work and so the police were called for a wellness check. It was quick and unexpected.

Children experience death very differently than adults do. By the age of seven, I knew that my dad wasn’t coming back, but I couldn’t always grasp why, exactly, all the adults were crying and sad most of the time. In fact, when I think back to that time, I don’t remember his funeral, but I do remember playing with my nieces and nephews. It wasn’t until I was a bit older, hitting milestones and graduations, that I truly felt his absence.

Years later when I was in high school, my Nana (on my mom’s side) died after having survived a stroke five years before. We received a phone call one morning when I was running late for school-the nurses in her nursing home told my mom that she was showing signs of imminent death. I didn’t realize this at the time, but that was my first experience with how the body transitions from life to death when there’s no sudden interference, like my dad’s heart attack. When we got there after they called, she was still awake and responsive, although not verbally. As the hours progressed, she became unresponsive and lost consciousness, and her body continued to go through the changes that happen when it no longer needs to function. She lived through that day, that night, and the following day but the next night, as I lay on the floor beside her bed, I became aware of a change in her breathing, and I just knew that her last breaths were near. I woke my mom up and we stayed by her side – at one point I put my hand over her heart, and felt it stop beating.

Watching my Nana slowly decline over the five years after her stroke was heart wrenching. She and I were so close; she was my favorite person in the world. Long before she died, I would cry and grieve for who she had been. When she did die, the grief wasn’t as stabbing or all consuming like it had been when my dad died. In fact, not long after she died my dog died and I remember feeling guilty that I grieved my dog longer than I did my grandma until my mom rightly pointed out that I had been grieving the loss of my grandma long before she was physically gone.

Death and I took a break after Nana died and I can’t say that I was all that heartbroken to say “see ya” to him. Our reunion, however, blew our first two meetings out of the water.

Rewinding a bit back to after my dad died, my mom never remarried so it was just her and me against the world. It wasn’t always true when I hit the rough teenage years, but as adults she and I were two peas in a pod. We were friends. She didn’t have to be responsible for keeping me alive and in one piece anymore, and I didn’t have to ask her for permission to do anything I wanted to. My mom-Dr. Jill Stoefen-Fisher-was an incredibly strong woman who didn’t let being a widow hold her back; she showed me that women can do it all. She wasn’t one of those moms who pressured me to get married or give her grandbabies, although I know in her heart she was hopeful for both.

Imagine her happiness, then, when I told her that my then-boyfriend, Ash, and I were engaged. I’m pretty sure she and the rest of my family like him more than they like me, so she was over the moon excited. I didn’t think we could top that level of excitement until I told her about a year after we got married that I was pregnant with her first grandchild. Now she was over Jupiter, I think. She was excited to be a grandma…to be a Nana. She started planning the quilt that she was finally going to get to make for her grandchild. She started planning my baby shower. She started thinking about living in Minnesota year-round (she was a snowbird) and all the trips and activities we’d get to do with the baby. She even braved the Minnesota winter and came to help set up the nursery in February. That visit was our last “life is normal” visit.

During that February visit Mom had a cough and was run down. She never complained and enjoyed our shopping excursions, but it was obvious she wasn’t feeling herself. When she returned to Arizona and saw the doctor, they initially told her it was something called Valley Fever, a respiratory fungal infection that’s not uncommon in Arizona. Each time we talked on the phone she assured me she was fine and was feeling better, but that couldn’t have been further from the truth.

One day my aunt, Mom’s sister, contacted me asking if I had heard from my mom that day as she hadn’t heard from her since a couple days before, which was unlike my mom. I hadn’t and reached out to my mom who told me that her neighbor was going to take her to the ER but that everything was ok. As I now know as a mom myself, that is something that moms always say to their kids. After a few hours of not really knowing what was going on, I was talking to her on the phone while she was still in the ER and I finally said,

“Mom, I feel like there’s something you’re not telling me.”

“They found lesions on my lungs, pancreas, kidney, and spine.”

My mom was diagnosed with metastatic lung cancer when I was 34 weeks pregnant. The world stopped spinning, but I didn’t, and I couldn’t catch my breath. My husband and I flew out to Arizona, managed to get her air ambulance back to Minnesota, and she began treatment while in the hospital. The cancer was so advanced and so aggressive that she literally declined in a matter of hours, and she almost died the same day she started chemo. We were trying to buy her time when she was already out of it.

So many times during that period I would get a vision of a crossroads in my mind because I didn’t know how I was supposed to feel. I wanted to be happy that I was about to have my first child-a girl-but how on earth could I be happy when my mom was fighting a terminal diagnosis? My mom. This woman who was always in my life, always a guiding voice, always a compassionate presence, how could I be happy knowing she wasn’t going to get to know her granddaughter for very long…if at all? A life ending and a life beginning were intersecting simultaneously, and I didn’t know at the time that it was ok to honor both.

Mom, stubborn lady that she was, held on long enough that she got to meet her first granddaughter. They even share a middle name (which was my Nana’s name). She got to love on that baby for just over a month before death caught up with us.

First time holding her first grandchild!

As is the case with terminal cancer, we reached the point that treatment was no longer working. It was time for that dreaded word.

Hospice.

It’s a word we knew was coming and one we didn’t want to hear, but we knew it was our best option for keeping her comfortable in her final days. Mom did hospice in my home, surrounded by the love of friends and family that came to say goodbye and listening to the sounds of an eight-week-old baby cooing and grunting.

The days were long. I switched between anger and despair over losing my mom to joy and hope when looking at my daughter. There were times that I caught myself thinking “I just want my life back. I just want this to be done.” And then I felt guilty for wishing away the little remaining time I had with my mom. We had visits from hospice every day and I got exhausted with the constant coming and goings, even though we were incredibly lucky to have the hospice team by our sides. It was all I could do to simply remember to breathe.

June 28, 2018. After a couple days of hallucinations and attempts to get out of bed, Mom was unresponsive. Her breathing was beginning to change. She was right there in front of me, her hand in mine, yet I would never hear her voice again, or feel her arms around me. I would never roll my eyes at some corny joke she made, or text her a quick “I love you, Mom.” Shortly after 2:00 that afternoon, I noticed the same change in her breathing that I had noticed all those years ago with my nana. Just like I had with my nana, I put my hand over my mom’s heart.

And felt it stop.

That was it. She was gone. The first person I would turn to when my heart was breaking was no longer there. After the funeral home took her body away, I climbed into bed and snuggled my baby while my husband ordered my favorite comfort food, sushi. I ate it in bed while visiting with friends that had come over to hold space with me.

Now, I am in the second part of grief-making a new life after loss.  I find myself called to being for others what I wish we had had for her. An end-of-life doula—someone to normalize death and dying, someone to listen and validate and guide, someone to help gently and compassionately ease the transition from life into death, from life with someone, to without.

Dying is scary, but it doesn’t need to be. Having an EOL doula by your side can help ease the mystery and uncertainty that often surrounds death. I would love to connect with you if you, or a loved one, are facing a terminal diagnosis and want to be an active participant in preparing for death.

With love,

B.