Six years ago tonight I laid down next to you for the last time. There are more lasts than firsts, it seems, with you, Donna. That compounds my sadness around your death. I am still learning about grief and each year, each birthday and anniversary, feels a bit different.
The deep sadness over your death didn’t hit until just a few hours ago. I was alone in the car, driving, off to meet a friend for coffee and talk about writing. The tears finally found me. I was wondering when they would, and there they were. I fought them back until the drive home when I had no more reason to fight them off.
I surrender. For now, in the quiet of the house, typing these words in the bed where six years ago tonight you breathed your last breath, I grieve unapologetically. I cry the tears, I feel the feelings. I miss you and I still struggle trying to remember the time with you, trying to conceive of a life without you.
You made me a mom, my girl. You teach me, still, every day. I try so hard to be worthy of you. Some days I nail it, other days I fail terribly. Six years is a long time. My heart is full with your absence. The love I have for you remains even though the memories of you fade.
The specifics of you, Donna, are fainter, fuzzier, like a Monet painting. I ache for the clarity of you that I will never have again. I must make do with the memories, even as they get further away with each passing day. I hear your brother breathing heavily on the baby monitor and it reminds me of your last days, how your little lungs, laced with cancer, labored to fill and empty, fill and empty, fill and empty.
My life is full and empty at the same time. The days are busy with your brothers, but always, whether in the forefront or the background, you are there, guiding me, chiding me to be better, kinder, more patient, more loving, more giving. I am grateful to you for that. Without you, I fear I would fail.
One day last week a mom remarked how lucky I was not to have to worry about raising a girl, the idea being, I think, that boys are easier. I smiled and didn’t say a word. I know that I had a girl, once upon a time. She was you. Her words unintentionally cut like a knife, ripping off the scab I work so hard to maintain that keeps the grief in check.
Some days I want to scream. Some days I want to hide. Some days I can’t get enough of this beautiful, wondrous world we got to share with you for four years. Some days I think I can’t possibly bear another moment playing the part of a busy mom of two active boys.
And then I breathe, and think of you, and do as I always did with you — find my strength in your example.
You have been gone longer than you were here with us. How is that possible? I think it must be related to that new math that your brother brings home that I don’t quite understand. No matter what angle I try and approach it, it doesn’t make sense, it is counterintuitive to every rule I know to be true. Just like your loss, your absence.
And again, I breathe, and think of you.
While the specifics are not as clear, and they continue to fade as time passes, you are, gratefully, still a part of me. You will, I hope, always be there, a part of my maternal DNA.
I miss you, girl. Six years is a long time to feel your absence. But every day, even with empty arms that ache, my heart is full.
What if my daughter Donna had survived her cancer?
I don’t ask this question often, but at birthdays, when the days are long and the calendar turns to July, I can’t help but think about the what ifs. This year they are consuming. This year, on Monday, actually, Donna would turn ten.
What if Donna were still living? What would a ten year old Donna look like? Be like? Act like? What if Donna had survived?
Tonight and tomorrow night, Taylor Swift is playing sold out stadium shows at Chicago’s Soldier Field. Ten year old girls and their 45 year old mothers both like Taylor Swift. Would we have made a girls’ weekend out of it and celebrated double digits at the concert, maybe splurging on a downtown hotel?
If Donna had survived, she would be in the thick of tweendom. She didn’t, and instead I am changing the diapers of a not quite two year old boy — my second son, Donna’s second brother. I sometimes wonder what the challenges would be of raising a girl. I know the parenting issues are different for girls and boys. And a tween? All I know about that is what I read in blogs.
Would I have a girl with sass and eye rolls asking to wear too short shorts? Would I have a nerd totally into steam punk? Would I have a ballerina pining for point shoes?
I don’t know. No one knows.
I sometimes allow myself to go down the rabbit hole of what ifs. I don’t indulge these what ifs often, as they are brutal and painful and in the end, not very beneficial to anyone. But these past few days, the what ifs have been hard to stop.
What school would Donna be in? She was so very bright, so smart. Would she, like her younger brother, have tested into a “good” Chicago public school? Would they be at the same school? I took pen to paper a few months ago (and was so sad it required pen and paper) to figure out what grade Donna would be in. If she were alive, she would be starting the 5th grade this fall.
What would Donna’s friends be like? Would there be sleepovers? Drama sessions? Do ten years olds have phones these days? Do they text? Have the mean girls asserted themselves yet? Surely Donna wouldn’t be a mean girl, would she?
Would she have liked Frozen, asking for Princess gowns and all things pink? Would we have seen Inside Out together? Would she have cried like I did? I’ve seen it twice now and both times the tears rolled freely when Joy finds herself lost in the Memory Dump, frantically realizing that she is surrounded by discarded memories that are fading and disintegrating as she helplessly watches. Poof, there goes another.
I cried so very much at that part of the movie, just as Joy did, because that is how I feel about Donna — my too few memories of her are fading and disintegrating as I helplessly stand by. What can I do? Time passes, it moves forward, without Donna. Poof, there goes another. The memories fade with nothing to replenish them. Poof.
I am a weepy, leaky mess this weekend. I’ve stopped trying to make it anything different. I miss you, girl. I miss mothering you. I miss teaching you and learning from you.
What if you had survived your cancer, but were left with scars, internal and external? What if the treatment had changed the things that made you so much you? What if you could not talk or could not walk? What if you felt self-conscious and awkward about not developing like other girls your age because of what the chemo did to you? What if you hated being a cancer kid and all the things that go along with that? What if other kids made fun of you because you looked or acted differently?
Would I embarrass you now? Would now be the time where pulling away from me and your Dad was developmentally appropriate? Would you have long hair? Would you let me braid it? Would you still have curls? Would you hate them if you did?
So many questions, girl. So much to think about and sit with. So much time and space without you. The days are long when you grieve, but never so much more than in July.
I miss you, girl. I’ll meet you there, okay?
**********
A special fundraising page for St. Baldrick’s has been set up to recognize Donna on her tenth birthday, Monday, July 20th. Please consider being part of $10 for Ten, and donating to honor the memory of Donna while helping to raise funds for childhood cancer research. You can find the page HERE.
It’s happening again. The childhood cancer community, a group I am both honored and sorrowed to call myself a part of, is getting it wrong again in a very public way. National news outlets are now reporting on what I have seen on my private Facebook feed almost immediately after the announcement — sour grapes over Caitlyn Jenner receiving the ESPY Arthur Ashe Award for Courage rather than our own community’s Lauren Hill.
For those of you who don’t know (those of us in the childhood cancer community require no introduction), Lauren Hill was a 19 year old college basketball player at Ohio’s Mount St. Joseph who died of one of the most vicious forms of pediatric brain tumors, DIPG, on April 10, 2015. Diagnosed shortly after her 18th birthday, Lauren inspired thousands with her courage and selfless focus on the importance of research for other children, knowing full well she herself would not benefit, as DIPG remains a terminal diagnosis. Before her death, Lauren directly inspired over $1.5 million in donations, and that number has risen significantly after her death.
Lauren Hill and Caitlyn Jenner. Does one of these women hold the corner on courage?
There is absolutely no question that Ms. Hill demonstrated extraordinary courage in how she lived with cancer. She represented the best of humanity at a time of tragic loss for herself, her family, and her loved ones. Her selflessness inspired those within our community and a national audience to better understand the need for research and learn how severely underfunded pediatric cancers are within the larger world of cancer research. I salute her and remain awed by her grace.
And while this may be presumptuous to say, every indication is that Lauren would be ashamed of the childhood cancer community’s response to the ESPY award announcement. Like petulant children, I have seen countless activists bemoan Jenner’s selection for a courage award, demanding that Lauren be recognized for her clear superiority over someone who undergoes elective surgery. The rhetoric has been shameful, though most of it is couched in politically correct terms so as to ensure everyone knows that the childhood cancer community fully supports the struggles of the transgender community. Those disclaimers and assurances do little to demonstrate empathy for a condition that results in up to 46% of transgender or gender non-conforming individuals attempting suicide.
Please. And enough.
This is not the first time the childhood cancer community has created a public ruckus in response to something they disapprove of. Last summer it was the ice bucket challenge for ALS. For weeks I read blogs and saw angry status updates from Cancer Parents about how ALS was getting the support and recognition that our children with cancer should have. Like with Jenner, the unspoken suggestion is that childhood cancer is worse — worse than ALS, worse that gender confusion, worse than any cause or effort that eclipses our own.
It is shameful to me, and embarrassing. The childhood cancer community is acting in ways that, I hope, we as parents would discourage in our own children. If siblings were squabbling about not getting enough of this or that or things within the family not being perfectly equitable, our parental instinct would be to shut that s&%$ down. We can recognize that behavior as petty and immature and demand it stop. And yet, somehow, we cannot see it within the larger childhood cancer community and how we harm our cause by engaging in it ourselves.
It is time to stop the nonsense, the petty behaviors, the entitlement.
For that to happen, though, some hard truths need to be addressed. The childhood cancer community has no singular focus to rally around. There are many charities doing outstanding work on behalf of our children. I am honored to know some of the major players in the arena and, like with Lauren Hill, stand in awe of their efforts.
But not everything is rosey. As the mother of a daughter who died of an aggressive brain tumor, I have had other Cancer Parents ask why our family supports the work of St. Baldrick’s, given that their efforts are not exclusive to pediatric brain tumors. The suggestion is that the $365K+ our events have raised for research is somehow being misappropriated because it is not specific to childhood brain tumors. And, yes, people actually say this to me. The truth, from the mouth of our own beloved Dr. Stew, Donna’s oncologist and a renowned researcher, is that were we to donate $50K for research with the requirement that it be specific to Donna’s type of cancer, papillary meningioma, he would have to refuse it, as Donna’s cancer is not even being researched. How about them apples?
Perhaps the hardest truth of all is that our children with cancer have become symbols for folks wanting to feel connected to the next feel good story of the year. This month a documentary about Bat Kid will be released. You remember Bat Kid, right? Huge swaths of San Francisco shut down in November 2013 to accommodate the wish of young Miles Scott, a beautiful little boy diagnosed with leukemia, to the delight of an international audience who monitored the day via almost half a million tweets covering the events. The documentary is described as “humorous and touching.” Ouch.
1 in 5 children diagnosed with cancer will die of their disease, 1 in 2 children diagnosed with a brain tumor will die, and yet documentaries are being released that focus on the “humorous and touching” aspect of pediatric cancer. We allow that. Hell, I think our childhood cancer community, to a certain degree, encourages that.
I have said it before and I will keep saying it. We need to center and focus on one thing: research. R-E-S-E-A-R-C-H. Our government is not helping, the pharmaceutical companies are clear that there is no profit in devoting resources to childhood cancer, so they will not help. We must do it ourselves, as no one else understands. But we do not help our cause or our children by public displays of entitled, petty behaviors that cast stones on the hard work of other diseases and disabilities.
As the mother of a child who died of cancer, I understand the pain and frustration we all feel. We shout and we shout and we shout and our efforts don’t always have the impact we wish they did. This public nonsense, I realize, comes out of both exasperation and fear that our children will be forgotten. I live with that very real fear every day, so I understand, but it is no excuse.
We must stop the petty, immature, entitled behavior and remain focused on research. Period.
I have a lot of strong opinions. Think of me as the kinder, gentler Matt Walsh. Want to subscribe? Here’s how:
Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.
Mary Tyler Mom 