Shining a Light on Grief

Since our son, Neil, was diagnosed with terminal brain cancer in 2016, we have lost more children to DIPG than lives lost on 911. Neil died in 2017. Since 2016, families in the pediatric brain cancer community have sought the passage of what is now H.RES.416, the DIPG Awareness Resolution. 2024 marks a pivotal point in a story that began 62 years ago, in 1962, with the loss of Neil Armstrong’s 2-1/2 year-old daughter, Karen, to DIPG. Armstrong’s grief is central to the Hollywood movie First Man (released in 2019 and obscured by the attention given to the emergence of COVID-19). As a resolution of bereavement, H.RES.416 qualifies as an exception to House Rule 29, and should be eligible for discussion on the floor of Congress.

Bereavement begins at diagnosis. Last year, I participated in a 3-month grief writing program and published my story in an anthology of stories of love and loss, titled Shining a Light on Grief. I titled my chapter A Letter to My Son. Below, I share three excerpts:

“I joined two facebook groups – DIPG Awareness for Family and Friends (5.7K members) and DIPG Research (4.3K). Membership includes parents of children undergoing radiation, parents sharing experiences with natural therapies, parents seeking the newest experimental treatment, parents giving updates on their child’s treatment, and parents losing or having lost a child to the disease. It was place where hope battled mightily with despair. Every family came there in search of a support network and a cure.” p 60, Shining a Light on Grief (Volume Two)

Hundreds of families interact on these private group pages. The photos can often be difficult to look at. This is the one place, however, where we can share our grief and know we are not alone.

“The hospice staff kept urging us to discontinue the tube feeding and stop providing water. We resisted a while longer, as the visitors kept coming. When we finally made the decision to discontinue feeding, I was thinking back to your first breath, holding your small body in my arms for the first time and feeding you from my own breast. Holding back food and water was the most heart-wrenching decision I have ever made in my life. It meant letting go. My anguish was visceral. I felt it deep within my womb, and it was unbearable. While the nurses administered your morphine, I wished they would have given some to me.

“I stepped away from your bedside, hurried down the hall to the hospice chapel room, entered and closed the door. I sat down, alone, on the couch, and then… I began wailing… at God?… to God? Why? Why is this happening? Why did this ever have to happen? I sobbed. My eyes and face became raw with the salt of my tears and snot. I imagined your spirit, floating above me, looking down, unable to console me.” p. 69, Shining a Light on Grief (Volume Two)

After the funeral, we try to reclaim the piece of us that died, put it back together with the remaining pieces of our lives and move forward. This is extremely difficult:

“When Dad and I attended a five-day bereavement session at Camp Sunshine in Maine, we got to know 37 other families who had lost children to a variety of life-threatening diseases… Years beyond loss, many parents continue to attend camp, still feeling raw and brittle. Some Camp Sunshine parents had started foundations within a year of losing their child and were immersed in their causes. Others were still doing their best just to get from one day to the next, and that’s okay. I get that! …

“There were separate discussion groups for mothers and for fathers. Women tend to grieve more openly, while men tend to grieve privately. Mothers spoke of how they felt “lost.” I could relate, having felt lost some days. Some mothers freely discussed how their marriages were tested by the loss of their child. Although Dad and I handle grief differently, our shared loss has brought us closer together…

“So much of what we experienced with you was traumatic. Our autonomic nervous systems got scrambled, and this is especially evident at night time. When my body should be resting, it is wakeful. If I wake, as I sometimes do, at 2am, the rest of the night can seem long to me. Dad and I are a bit like soldiers after a war, suffering our varied wounds and private emotions. pp-78-79, Shining a Light on Grief (Volume Two)

While I contributed 24 pages to Shining A Light on Grief (Volume Two), my husband has poured his heart out by writing a 500-page book titled DIPG. We stand ready to help other bereaved parents put their experiences into words. It might be one paragraph or one page. Reliving the heartbreaking moments and expressing them in words can be extremely difficult, however, it can also be cathartic and healing. Congress needs to hear these stories – heartfelt expressions of bereavement from mothers, fathers, siblings, friends and relatives. Have you lost a loved one to a neglected cancer or are you close to someone who has? If so, please try to put pen to paper, and see where it takes you. Reach out to me if you need help getting started, editing a final draft or identifying your congressional representative. I’m here – wendy@netwalkri.com.