Can you see her? She’s there. Right there, always.
My daughter died seven years ago, next month. She was four. The concept of time plays with me on all things related to her. How is it possible that she has been gone so much longer than she was here? How is it possible that I haven’t smelled her or stroked her soft cheek in as many years as her brother has lived? How on earth have I managed things like groceries and laundry and vacuuming under the crushing presence of grief, a cruel master that never leaves you alone?
I walk through my days with my daughter by my side. She is invisible to you, but not to me. I can’t hold her or smell her or nag her to eat her vegetables and drink her milk, but she is there, always. She is there when I talk to you on the playground. She is there when I press the brake at the red light. She is there as I stand in line to buy pajamas for her two younger brothers. You can’t see her, but I can feel her.
It’s not enough, of course. I wish she were here in a way that children are supposed to be with their parents.
My invisible daughter would be eleven years old now. I have no freaking idea how to parent a tween girl. I imagine, often, that it is very different than the parenting I do know how to do — the kind that seven and three year old boys need.
I have no glitter in my home. No hair bows or Nickelodeon tween comedies. There isn’t a lot of purple or animal prints. Sleepovers are not yet much of a thing and I will never drop a dime at PINK. Training bras are something in my distant past, not an actual item in my laundry basket. Do eleven year olds go trick-or-treating? I don’t know. I guess I’ll find out in a few more years.
These are the things I think about without sharing with others. I haven’t figured out how to discuss my dead daughter in polite conversation. Dead kids are kind of a buzz kill.
I miss her, my invisible daughter. On days like this, when the light changes and pumpkins start to appear, my thoughts wander to not only the girl that was, but to the girl that never was, too. Would she like math or history better? Would mean girls have entered her orbit yet? What would eleven year old rebellion look like? Would she have started her period yet? What kind of things would make her laugh?
My daughter is invisible, but she is here. Always. With me, in my thoughts and in my heart and in my mother’s memory. You can’t see her and I can’t see her, but she is there in my tears and in my sad smiles. Science tells me that her DNA still exists deep within me on a cellular level, so, you know, there’s that, too. It’s not the same, of course. Not nearly.
My daughter is invisible. I miss her. I wish we could see her.
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 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.
This post is part of ChicagoNow’s monthly “blogapalooza” series, where our community manager provides a writing prompt to all bloggers with the only rule being it must be published within one hour. This month’s prompt:
“Write about a period in your life when you were at your best.”
Dammit. This is a tough thing to consider today. Not really where my head is at, you know? But, a challenge is a challenge, so I will give this a go.
I remember October 2, 2011 vividly. It was a beautiful early fall day in Chicago. I was working part time at the Alzheimer’s Association in Chicago, right on Michigan Avenue. I had gone back to work ten months earlier after the death of my daughter in 2009. My profession was social work, but the kind of social work I did before my girl was diagnosed with cancer — working with older adults and their families in a retirement community, providing advocacy and counseling to elders and their families as they coped with aging and death — well, let’s just say that my head and heart were no longer able to do that type of work anymore.
An old acquaintance from graduate school was a VP at the Alzheimer’s Association and knew I was looking for work. I applied to a position she had recommended me for. It was a purely corporate type of gig. Foundation work, not clinical in nature. Part-time. Creating training programs about dementia for paid caregivers and family members. Full disclosure, it was never a good fit, but I appreciated getting out of the house, I liked my co-workers, and it helped me re-connect to part of myself that I had lost when our family moved to Cancerville.
At the same time I went back to work, I started my Mary Tyler Mom blog. I was introduced to online writing through the CaringBridge page my husband and I co-authored through our Donna’s illness. After Donna died, my husband stopped writing, I did not. I came to realize how much I needed the words, the connection, the community. I also came to realize I needed to write about more than cancer and grief.
Mary Tyler Mom was born. The blog was named after one of my childhood icons, Mary Tyler Moore. As a young girl, I always found her spark and independence so appealing. She was gonna make it after all, you know? And, I needed to believe in those early days of my grief, that I was, too.
The first six months of the blog had absolutely nothing to do with grief or cancer. I trashed Gwyneth Paltrow more than once, in erudite and clever ways, and was celebrated with thousands of likes and shares. People, it turns out, really dislike Gwyneth Paltrow. My stomach literally turned when I realized that my clever quips gave other people permission to refer to this woman none of us knew personally as a cunt, a bitch, a whore. I felt lost. You see, I never revealed to my readers that I was a grieving mom. Because I had decided Mary Tyler Mom was not about that, it was about working and raising children. And trashing easy to hate celebrities.
Pffft.
Right after my daughter’s would be/should be 6th birthday, I came out to my readers. I introduced Donna to them. Finally. Timidly. I revealed myself to you readers for who I was, a broken, grieving, sad,but hopeful mom. I peppered anecdotes and memories of Donna in some of my posts, still feeling protective of how both she and my grief would be received, still worried that if I stopped trashing Gwyneth, people would stop reading.
In August of that year I approached my community manager at ChicagoNow, the same one who provided this damn prompt (thanks, Jimmy), with the idea to serialize Donna’s Cancer Story. I pitched the idea of writing about one month of my daughter’s 31 months of cancer treatment each day over the course of September. It was my effort to raise awareness for National Childhood Cancer Awareness Month. I was worried how he would receive it. I mean, 31 days of blogs leading up to the death of my daughter. Not exactly good time reading. Jimmy did not hesitate in his encouragement. Literally. Not a single second passed before he offered me whatever support I would need.
My pitch was naive, in that I didn’t realize what the process would be like. Seriously, who on earth could I have known?
The month started with a “game on” kind of attitude. The day before posting, my routine was to re-read the month’s worth of CaringBridge journal entries for the corresponding month. On September 1, I read about the 30 days that started with Donna’s diagnosis. I would then cross reference the thousands of photos we took of Donna during that same period of time, wanting to represent pediatric cancer both visually and through storytelling. I would generally wrap up the entry for the next day around midnight or 1 a.m.
Mothering Donna, my happy girl.
As the month progressed, this routine got harder. I got more tired. I stopped posting first thing in the morning, simply because the posts weren’t ready. I started writing at 9 or 10 in the morning, instead of posting. Again, as the days passed and my fatigue, both physical and emotional, worsened, there were days I didn’t write until my lunch hour at the office, posting later in the afternoon now.
The reader response to Donna’s Cancer Story took me by complete surprise. People were reading the entries like a soap opera, as if I was purposefully generating cliff hangers, as if our life hadn’t been a cliff hanger for those 31 months of treatment. It was wrenching and traumatic for me, writing Donna’s Cancer Story. It was also, potentially, one of the greatest things I will have ever accomplished in my life, telling the story of my daughter, who would never be able to tell it herself.
Oh, Donna. My dear girl. I wrote Donna’s Cancer Story for you, for me, too, selfishly, to keep you near, to keep you close, to alert the world that you lived, that you existed, that you were amazing. My life has changed because of you, and telling your story, sharing your life.
That day, October 2, was to be the very last entry in Donna’s Cancer Story. The final post was an unexpected addition about how to harness and direct the outpouring of help that people wanted to provide after reading of our girl, my Donna. Jimmy, my community manager, had also arranged for a live chat with readers. I was so tech challenged that he agreed to come to my office and help me navigate it. The response astounded me. Floored me. Humbled me. It still does, six years later.
That afternoon, I opted to leave work early. I walked out of the Mies van der Rohe high rise I worked in and out the door, heading to Chicago’s beautiful Millenium Park. I walked amongst strangers, native Chicagoans and tourists from around the world. None of them knew my story, none of them knew the sense of immense accomplishment I carried with me that day, as I enjoyed the warm sunshine.
When you bury a child, you no longer have the opportunity to parent them. That day, October 2, 2011 I got to revel in a month of getting to parent my daughter again, by telling her story, not stopping when the pain and memories overcame me, honoring my daughter in a way that was worthy of her. What a gift.
Mary Tyler Mom 