Searching for Other Bereaved Parents: Why Aren’t Hospitals Helping?

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By Suzanne Leigh

So we got through Halloween. Almost. Different friends, a different trick-or-treating neighborhood and for the first time ever my bright, brave shining star that is my surviving daughter was sister-less, as she hustled for candy with her sweet friend, who took the place of the sibling whose hand she would always hold.

Thank God that’s over, we said to each other as October 31 drew to a close.

But two days later, as I parked my car outside a neighbor’s home, grief grabbed me out of left field. (Look at those pumpkins! Natasha would love to see how they’ve been carved. Oh, that’s right, she’s not here. Natasha died. There will be no more Halloweens for her. How could that be. How could that be.) For a few minutes my elbow rests on the steering wheel and my head — hot and throbbing — rests on my hand as I wait for the waves of despair to crash through my body. I am remembering her as a newborn in my arms. So immediate and visceral was my love for her that I joyfully confided in her that “my heart beats for you, Natasha.” Thirteen years later, I cannot understand how this same heart — mangled, surely — continues to beat. But it does — very efficiently, obviously.

Halloween. Thanksgiving. The first anniversary of Natasha’s passing. Christmas. New Year’s. I’ve been wrestling with yearning and dread these last couple of weeks, but the small part of me that’s a pragmatist has a question: My daughter was treated at a topnotch hospital with a sizable pediatric oncology facility. Some of these young patients have died. Where are their parents? Perhaps we could help each other.

So I wrote a letter to our hospital praising their dedication and the exceptional standard of medical care we received in the five years in which my elder daughter was a patient. When Natasha died we found that there was no place to go, I wrote, noting that services for bereaved parents are very limited.

(Here’s what’s available in our city and within moderate driving distance: an annual weekend bereavement camp for cancer parents about four hours away; a bereavement support group where “everyone is welcome,” which means the parent grieving a child will be very much outnumbered by the more normal situation of a son or daughter grieving an elderly parent, a reality that exacerbates rather than alleviates our loss. And there’s a monthly support group for bereaved parents, one that is dominated by older adults who have lost adult children to accidents or violence. Fellow bereaved cancer mom and blogger Sara Lucas* writes of attending such a meeting: “No one else had battled cancer in their child … .I’m not at all trying to rank our grief — losing your child is always debilitating and inconceivable no matter how old your child is or how that death occurs. I’m just saying that I felt foreign, unconnected and deeply sad …. [After the sessions] I would walk out, carrying more than I had walked in with.”)

“The holidays are approaching,” I wrote in my letter to our hospital. “It is a dreadfully sad time of the year. I’m sure there are other bereaved parents of pediatric oncology patients in this hospital, who are feeling desperate grief, too. I wish we could reach each other. It would be wonderful if the hospital could help make this happen.”

That letter is currently doing the rounds, but I’ve been told through unofficial sources that the hospital would be reluctant to work with me to organize a meeting for bereaved parents, or to create a database in which grieving parents would have the option of sharing their e-mail address with others who have endured a similar loss.

HIPAA is an obstacle, said one person referring to the law that protects patients’ privacy. Lawsuits are another concern, according to another person. But the excuse that rattles me the most is the one about the need to “protect vulnerable grieving parents.”

Vulnerable parents who need protection from an unwanted invitation to share their e-mail? Seriously! We are parents who have willed ourselves to smile as we’ve scooped up a whole headfull of silky hair that has been shed on hospital pillowcases following chemo; we have calmed and comforted our children until they have lapsed into unconsciousness as a surgeon prepared to drill open their skull; and we’ve squeezed delicate hands as toxic treatments have been infused via a battered vein. We’ve been brave, because not being brave was never an option. Tears were always for later, usually for the shower when sleeping children could not hear us cry.

The notion that now, after years on the frontline of Cancerland, we require “protection” is a little patronizing and more than a little ironic.

*Sara Lucas: http://missingmywill.wordpress.com/2013/10/03/where-everybody-knows-your-name/

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