What Not to Say When a Child Dies

Dear Cretins/Bottom Feeders

What Not to Say When a Child Dies

Dear Cretin/Bottom Feeder at the Barber Street Park in Sebastian, Florida (or anyone who does this): Do not ever, in your gross insensitivity and supreme ignorance, tell a parent what they could have or should have done to prevent their child’s death. Just say you’re sorry, and shut up.

* * * * *

I shut up myself rather than respond to the cretin I encountered on a recent Sunday in the park. While pushing my granddaughter on a swing, a couple brought their two-year-old son over and the father began pushing him. I said how much I liked the park, especially the shaded walking trail.

The dad, I’ll call him Cretin, agreed and said that a friend of his, although having terminal cancer, walks to the park daily, walks the trail, and then walks home. Cretin added that his friend is participating in an experimental drug trial. Cretin said that, nonetheless, his friend’s chance of a cure was near zero.

I had recently heard a Radio Lab program titled “Tumor Talk” on NPR and told Cretin his friend might want to check it out.

“In fact,” I said, “I e-mailed a doctor on the show. My little girl died of cancer 28 years ago, and I asked him some questions and we discussed how cancer cells mutate and become resistant to chemotherapy.”

Cretin said, “We only do alternative medicine. We focus on diet and avoid chemicals.”

Cretin’s comment surprised me for a few reasons: I just told him and his wife that I had a child who died, and neither of them acknowledged that. It was the first time in twenty-eight years that someone ignored me when I noted my loss.

Also, after not expressing any sympathy about my child’s death, Cretin shared his cancer-prevention philosophy.

I was stung by them brushing aside my child’s death, but I knew I had to say that diet and avoiding chemicals provide no guarantees.

“Sometimes, nothing prevents or cures cancer. Cancer cells are rogue cells. That’s why it’s so hard to treat,” I said. “I fed Alexa a wholesome vegetarian diet. We avoided sugar and processed foods and she still got cancer.

Cretin shook his head: “Oh, no. You can’t do vegetarian.”

The weight of Cretin’s words compressed my spirit. “You can’t” parked on my left shoulder, and “do vegetarian” parked on my right—concrete blocks of pain numbing me into silence.

I kept that silence for the sake of the two innocent children on the swings. I staunched the angry retorts in my mind. I kept calm and focused on my hand’s gentle push on my granddaughter’s swing.

My unsaid words creaked with the movement of the WD-40-starved swings. In a few minutes, Cretin, his wife, and child left. I don’t remember saying goodbye. I recall only the words, “You can’t do vegetarian” ricocheting in my psyche.

I felt searing pain at Cretin’s words. In his know-it-all stance on disease, he pointed an accusing finger: “You can’t do vegetarian.” Unsaid were the words, “You did vegetarian, thus, you’re responsible.”

My grief and my healing process have been ongoing for twenty-eight years. I know why people say (and presume) certain things: They believe if they do X, Y, and Z, they/their child/spouse/whomever they cherish will not die. I understand their fear-based efforts, so my anguish from such comments as Cretin’s doesn’t derail me for long.

My heart aches for bereaved parents who haven’t had significant time to process and heal from their grief. The insensitivity of questions such as the following crushes them:

•     The parents of a teen killed in an automobile accident are asked if alcohol was involved.

•     The parents of a drowned toddler are asked if they had a pool alarm.

•     The parents of a murdered college student are asked why she went to a party alone.

•     The parents of a bicyclist killed by a drunk driver are asked if their child was wearing a helmet.

•     Parents of a baby who lives only a few days because of devastating birth defects are asked what caused the birth defects.

•     The parents of a stillborn are told they can “try again.”

•     The parents of a suicide victim are asked if they knew their child was depressed.

•     The woman whose baby dies of SIDS is asked if the baby was sleeping on his back.

•     The parents of an overdose victim are asked if their child ever received drug treatment or counseling.

•     The father of a little girl who died as a result of a bizarre seatbelt malfunction is asked if his other children still wear seatbelts.

Most people are well meaning and are not insensitive on purpose. But those questions and comments still hurt. It’s important that people know that other than consoling, heartfelt words, it’s best to ask no questions, offer no answers, and especially never ever advise a bereaved parent what they could have or should have done.

Most bereaved parents suffer the infinite loop of “could have/should have/wish I would have.” No one should add to that distress. Only after processing and beginning to heal from their loss—and even then it’s hard—do bereaved parents know the futility of “could have/should have/wish I would have” thought progressions.

Bereaved parents know we cannot change what happened. We know we will live the balance of our lives without our child.

It’s a heartbreak living without a loved child (no matter if that child was six months gestation or sixty-seven years), but in spite of that, many of us have succeeded in having lives that are rich—lives that have great joy.

Help us cultivate joy. Help us be more compassionate and empathetic in spite of and even because of our loss. Be more compassionate yourself. When you hear of child loss (or any loss), just say you’re sorry. If you must ask a question, let it be this one: How can I help?

Once Upon a Long, Sad Month

Once Upon a Long, Sad Month

October 1, 2014

October once was my longest, saddest month. Child Cancer Month—September—ended yesterday. Families who have lost a child to cancer don’t walk away at the end of any month. Their awareness does not shift to another disease or cause. Throughout September, I read about children fighting cancer, those who are winning, and those who lost. Photos revealing the ravages of the disease haunted me. Photos of those mourning the loss of a child to cancer resonated with me. Photos of children smiling in spite of their near-Sysyphean challenge gave me—give me—heart, because each one reminds me why this illness cuts so deep and stings to the quick of our souls. Children—their smiles, their innocence, playfulness, bright spirits, and hope for and dreams of the future—reflect everything we hold dear about children.

However, for those navigating the alien paths of child cancer, the tremendous challenges they face anchor them in the present. The future is too uncertain. Their razor focus is on the daily realities of living with, treating, and managing the illness. Advances in treatment mean that day-to-day reality of child cancer sometimes ends. Children go into remission and many are healed.

Other families and their children aren’t as fortunate; remission and healing are elusive and a child dies. They then are faced with navigating the alien path of how to live after child loss.

Not just during Child Cancer Month, but every month, I navigate that path over which I began stumbling on November 2, 1986, when my seven-year-old daughter Alexa died.

I still fall often, but not as much as in the early days, weeks, months. I’ve devised ways to plant my feet in a more secure stance. I look ahead before stepping. I also have devised ways to pick myself up when I fall. I don’t stay down as long as I once did.

One stumbling area that kept me down—keeps me down—too long is October—the anniversary month. I say month rather than day because the worst grief is not always on the anniversary of the death. For many, the days, weeks, and, for me, the month preceding are fraught with emotional and psychic peril. On this day, we were at Shands Hospital. On this day, Alexa had her last chemo. On this day, she made beautiful cards for a friend’s new baby. On this day, I hid from trick-or-treaters. On this day, our dear pediatrician said . . .

The first year, October smacked me in the face. I crept through it, the memories of that last month hobbled me. As more years passed, a vague sense of unease washed over me during October as I remembered where we were and what we did “on this day…”

Hardest were the Octobers I lived in the northeast away from my home state of Florida. September’s killing frost decimated my garden. October days meant trees barren of leaves and often-gray skies. Less light, less sun let the cold seep into my bones, reminding me of a deeper chill from that 1986 October. In an odd twist, and a blessing, by November 2, I often was not crushed and broken as I was in the preceding days. I had survived another year of loss.

It’s not always the anniversary that hurts deepest. Often, the days preceding an anniversary cut the most. Because of that, I want to further my own healing during these October days. In the process, I hope to further the healing of others—not only those who have lost a child or loved one from any cause, but also those who have lost a sibling, mother, father, friend, spouse—anyone they loved.

Loss will touch each of us. That touch can sear our souls. As a healing balm, I present a new October. Each day, rather than become snared in the dread of loss, I intend to spin a circle of celebration. I loved Alexa. I lost her. What did I love that made the loss so keen? What do I do, and what will I do to keep from stumbling—through October and every day, week, month? By sharing my journey through October, I hope to make your journey easier, to offer a hand when you stumble, to keep you from falling. If you fall, I want my hand to be there to help you up and back into life.

* * * * * * *

Do you have a “long, sad, month”? Please feel free to share your concerns, struggles, victories in the comments. I welcome private correspondence at mysistersgarden@gmail.com.