For the past five years, I have dedicated my blog platform in the month of September to raise awareness and dollars for pediatric cancer research. I’ve done this by telling the story of my daughter’s cancer and inviting other families living with childhood cancer to do the same. I have been honored to share ninety stories in the September Series, as well as writing and sharing Donna’s Cancer Story.
This year, with some regret and some relief, I am choosing to take September off.
It’s hard to explain the toll it has taken, how hard these Septembers have been for me and on me, and by extension, on my family. That personal cost has always felt somehow less important than the pain and suffering of children with cancer and those who love them. I have done the work of steeling myself and pushing forward, believing that the benefits of these stories far outweigh whatever intangible price I have paid personally.
My gut is telling me to pull back this year. I am trying to accept that knowing my limitations is a sign of strength and not weakness. I am working to convince myself that I am not walking away from a cause that is near and dear to me — helping people see and understand the cost of underfunded research for childhood cancer, but that I am choosing to care for myself so that I can continue my advocacy, in whatever form that turns out to be.
It’s been a hard sell.
Last week I wrote a blog post about the three grieving parents that told the stories of their children at the Republican and Democratic political conventions. Despite me stating very clearly that I did not judge Patricia Smith or Mr. and Mrs. Khan, despite me saying in black and white that given the chance and an invitation, I would surely make the same choice as the three grieving parents, despite me having told the story of my own grief for the past five years, more than a few readers chose to misinterpret the post and suggest, in lauguage both kind and unkind, that I was being hypocritical.
The comments on my Mary Tyler Mom Facebook page and the online comments after the Chicago Tribune picked up the post to run on their op/ed page drew me closer to deciding to shut it down, my public grief and advocacy, at least for now. But what led me to embrace my decision, the one I had been dragging my feet on for weeks, was an article I read over the weekend in the New York Times about the Khans’ experience, “Moment in Convention Glare Shakes Up Khans’ American Life.”
The article is moving and powerful, an exploration of how a couple continue on after the loss of a child. It identifies the anchors the Khans found and those they made and clung to in order to stay afloat and not be lost in their sea of grief. The story talks about their day-to-day lives and their decision to speak at the Democratic National Convention, to call out Donald Trump for his behavior that the Khans fear, justifiably. And then it touches on the price they have paid as a result of their public grieving, their public advocacy.
There have been hateful messages, health concerns, suggestions that the Khans and their hero son have acted against the United States of America, their chosen home. Part of themselves and part of their grief has been lost to them, just as I had imagined it would be when the DNC brass asked them to speak for political purposes. They are symbols now, for better or for worse.
I respect this couple more than I could ever convey in words. And, I am taking a lesson from them. I am following their lead and stepping away from the public aspect of grief and advocacy, at least for now, this September.
I could try and articulate for a reader who has not experienced the loss of a child what the cost has been for me to remain a public symbol or gateway into the world of childhood cancer, but I would fail, I am certain. There are so many intangibles, so many subjective measures, but they are specific to me and my experiences. Yes, there have been hateful messages through the years. Strangers encouraging me to “find a new angle,” or other such nonsense. But those have by far been overshadowed by the positive reception and welcome appreciation of people across the globe, grateful for having their eyes opened to childhood cancer and its underfunding in research dollars.
My gratitude abounds.
But still, part of me wants and needs for my girl, my Donna, to stop being a symbol, stop being a gateway into the childhood cancer community. When I first shared Donna’s story in 2011, it was with the implicit goal of getting readers to come to know and love her, believing that if someone knew a child with cancer, they would start to care. And, I think, it worked. Amazingly, astoundingly well.
But still, there is a price to pay for me putting out my girl as bait, hoping she would catch and capture people’s attention, in order for an important goal to be achieved — that strangers to the childhood cancer community would see us and know we exist and that childhood cancer is woefully underfunded by both government and private research grants. I have used my girl and her story, her pain and her suffering, for what I believed to be the greater good. That is my truth, as hard as it is to type, as hard as it is to read, as hard as it is to understand.
With Facebook algorithms changing as they are, fewer of you are reading my words, fewer of you are sharing, and fewer would see any child that would be featured in a 2016 September Series post. It is hard for me to justify the solicitation of stories, to ask other parents to lay themselves bare, knowing the tangible benefits no longer exist in ways they did even a year ago. It is more difficult to reach online readers today than it was when I started this method of advocacy in 2011.
I remain so grateful to the dozens and dozens and dozens of families who opened themselves up to share their pain and joy and fear and vulnerability and their children with cancer so that others may gain a better understanding of how devastating a pediatric cancer diagnosis is. I can never repay to them what they have provided — sharing themselves and their children for you to gain awareness. I still believe all of our efforts were worthwhile. And the children I have met remain with me in ways I find hard to explain. I hold each of them close to me.
Thank you for reading and sticking with us in the childhood cancer community these past five years. And please remember that even if you are not being fueled with stories of different children every day next month, that children are still being diagnosed, treated, living and dying with cancer. We are all still here, needing you more than ever.