Lisa Buell

Lisa Buell is a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents, as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. A published author, Lisa is writing her first book, entitled “Call Button,” a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care.

Articles:

Lucky Hat: Rituals Keep Parents’ Hope Alive

Rituals Keep Parents’ Hope Alive The double doors are closed to Three North at Stanford Children’s Hospital, where my daughter Madison is supposed to get her chemotherapy. It’s our second session, Maddy is seven months old sitting patiently in her stroller as I come up to the thick double doors. This is a very bad sign, these door being closed. Maybe Maddy shouldn’t get chemo today. These doors haven’t been closed before, something’s wrong. The hair stands up on my arms, a tingling sensation crawls up my back, sits on my head like a hat. My partner Nancy is down […]

Couple Grieves Lost Child at Different Pace

I could feel the pressure, my skin becoming tight, my breath shallow and cold, the room too full of her memory. And I would go, from corner to corner, wall to wall, choosing, oh so carefully, the pictures to be put away. I nestled them in drawers between spare candle holders, foreign coins, old crayons and the like, possibly useful objects that will someday be stored in the attic. I would never send them straight to “storage” without having them rest in the holding place first, the place that gives me the illusion of possibility, and with that, accessibility. She […]

Choosing to Live Even as a Child is Dying

Until her last breath, I never believed my daughter Madison was going to die. Three years after she took that last breath I considered that maybe she wouldn’t be coming back. Denial is a huge part of parental grief, a necessary part; it’s what helps us to get up in the morning. Denial was exactly what enabled me to mother my child all the way through her transition. I understood that she might die, and we made all the necessary calls to get friends and family to our home when Maddy’s breathing changed. We didn’t put her through extraneous testing […]

The Yin and Yang of Caring for Terminally Ill Child

Alternative therapies weren’t the first line of defense when our five-and-a-half month old was diagnosed with cancer. We opted for what was proven; we put Madison’s life in the hands of exceptional pediatric oncologists, surgeons, radiologists, nurses and anesthesiologists. If untreated, the cancer was sure to kill her, but so could the treatment. We threw every recommended treatment at the cancer. Her quality of life was the point off which we navigated the maze of medicine hashing out benefits vs. burden. We sought alternative therapies in an effort to support our daughters system throughout the rigors of treatment. Lavender wafted through our […]

Hard Time for Moms Near the End of the Journey

It had been a warm summer, the breeze filled with the scent of sweet jasmine. The bright magenta of the Bougainvillea bloomed with fierceness, its roots running deep, tapping into the water below. It bloomed despite the lack of watering and it stood as a physical sign of our family’s battle with cancer: we continued to bloom. It was early spring and Madison had just finished her last chemotherapy. We were at the hospital getting what was supposed to be a series of scans over several years. This was our first; if all went well, we would be able to […]

Does Grief End? Rediscovering Laughter

I heard the sound coming from somewhere close, swelling from the deepest part of my being. I was almost startled when I felt it resonate through my body, felt the vibration, lungs rising and falling to keep up with the demand of my spirit. How long had it been since I had felt laughter? The noise was both familiar and startling. The overwhelming sense of loss that guarded the gate to my soul must have been on a lunch break. Loss and I had made an agreement after my daughter died that I could never be happy again. But now, […]

The First Mother’s Day After Maddy’s Death

By Lisa Buell — I got a truck full of manure delivered to me the first Mother’s Day after my daughter Madison died. I had been sleeping in, hoping the day would turn to night before I had to come out of my room. The vibration of the truck shook the old single pane windows of my home and saved me from another morning of sleep without rest. I threw on my robe and made my way out the door just in time to see the load of turds falling on top of themselves in my driveway. “Sorry, I knocked […]

What It’s Really Like When Your Child is Terminally Ill

By Lisa Buell — How could death possibly happen to a child? We all enter into an unspoken contract that our children will outlive us. It’s what gives us the courage to become parents in the first place. When that assumption is suddenly thrown into question because of a child’s illness, we find ourselves looking for reasons hidden in the unreasonable. We seek for clues to explain why this tragedy is happening to this particular set of parents, to gain understanding and to create distance as well. As parents of a dying child, we didn’t want to see ourselves as […]

Taking Care of Your Relationship After the Death of a Child

By Lisa Buell — Valentine’s Day is a day for lovers, a time to celebrate our passion for one another. But what happens after our child has died? Our innocence is lost and it takes every ounce of strength to be civil or even interested in what our partners are saying. What happens when our psychological energy is consumed with the memories of our child and it is taking everything we have just to get through the day? What happens when we can barely look at our spouse because it reminds us of the dream that was our life, a […]

Emotions of a Diagnosis

By Lisa Buell —

Open to Hope is an online community offering inspirational stories of loss, hope and recovery. We believe hope is the bridge between loss and recovery.