Yesterday I went to my Dad’s condo. I don’t go there often, actually avoiding it as much as I can. It makes me sad to be there. When a person dies, aside from love and memories, what remains is their stuff. Junk now, to most anybody but the deceased. I don’t say that as a disparagement to my dear Da, but as truth. The weight of it, how I feel when I am around the remnants of my Dad’s life, is a heavy burden to bear.
When my Mom died ten years ago, I was buffered from the responsibility of taking care of her things, as it was my Dad’s call. Now, there is no one left to call it. It will go. The four kids will pick through what remains of his life and find for ourselves what holds meaning. There are books and my Mom’s oil paintings, some of his treasures from travels to Ireland, photographs.
What we keep close to us in our day-to-day lives says something about us, I think. Our things are revealing. One of the things that has always made me wistful when visiting my Dad was seeing what he kept of my Mom’s.
He has been a bachelor for the last ten years of his life, and if he ever dated or enjoyed another romance, he kept it to himself. Because of that, he lived a bachelor’s lifestyle. Frozen food. Not a lot of creature comforts. A spare home life that didn’t involve hosting others.
He was surrounded by a lot of paper in his last years. Piles of papers and a hodgepodge of his interests that hung on the walls — photographs of buses and trains (his life’s work was in transportation), union posters rallying the middle class, calendars marking his days.
There, in the middle of all that bachelor random chaos, was my family’s china cabinet I remember so well from childhood. The dining table was now used as a desk, but a few feet away was the companion china cabinet.
The cabinet was devoid of papers. It’s glass was kept clean, making it easier to see the treasures inside. There, among the piles of ten years of widowhood, the china cabinet stood tall, uncluttered, reminding my Dad, I imagine, of a life he once lived with my Mom when the papers were confined to his desk or garage. A better life, maybe. A more comfortable life, certainly.
I miss my folks terribly. Never more than when I stand in my Dad’s empty condo surrounded by what remains of their lives together, my Dad’s life alone. 46 years of marriage, 10 years of widowhood, and all that remains are boxes of papers and a china cabinet full of Waterford crystal, ornate knick knacks, hand painted plates with delicate flowers and birds, and porcelain vases.
That china cabinet was my Dad’s last day-to-day connection to my Mom. It held the pieces of their lives together that grounded him somehow and was, I believe, his uncluttered homage to their marriage.
My Mom and Dad in a favorite photo taken by me sometime in the early 2000s in Alabama. They spent their winters in Gulf Shores, Alabama leaving the cold Illinois winters behind.
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.
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I just posted a short video of Mary Tyler Toddler eating a plate of fresh cherries and raspberries with this caption, “In light of all the muck you scroll through on social media, I thought that 30 seconds of XXXXX eating might make it all more bearable.” IT SEEMS TO BE WORKING.
This morning, after a brief period of high chaos caused by me forgetting that it was the one day a month our cleaning team arrives at our back door at 8 AM to help me keep our dirt and grime to bearable levels (and, yes, I have cleaning ladies), I took the boy out for pancakes.
Sitting across from him scribbling with crayons and reading books somehow made the massive stress I had been feeling, the sense of sheer vulnerability and exposure and panic felt when you hear a key in your back door while you’re still wearing the period stained shorts you slept in the night before, your hair unwashed for five days piled high on top of your head, hoping the mass of curls doesn’t too loudly shout, “I DON’T GIVE A FIG HOW I LOOK.”
I needed to exit that place of shame and stress and Polish ladies tsk tsking so opted to get out of Dodge with the toddler in tow. IT WORKED.
Toddlers are gurus at living in the moment. They are zen masters of mindfulness. Toddlers have no shame. Toddlers experience stress, but are so easily distracted from those things that cause them dismay, that their stresses are easily forgotten. Toddlers got it going on.
Our world can be so ugly. Social media tends to magnify that. We take glee in other people’s sorrows and struggles, we get indignant towards most folks who think or act differently than ourselves, and there seems to be an unending supply of scandals and stories to feed the beast that Facebook created.
You know who doesn’t care about any of that nonsense? Toddlers, that’s who!
Toddlers have no idea that Amber Rose wears bikinis on balconies or that she likes to poke fun of her old flame’s current wife on Twitter. Toddlers happily eat their snacks while the moral right tear apart Caitlyn Jenner while defending Josh Duggar. Toddlers thrive on routine and comfort, security and consistency, not fresh blood.
Toddlers have so much to teach us all. And lucky me just happens to have one right by my side for most of the day, every day.
And I totally get that not all is well or easy in Toddlerville. There are only so many times I can read “Baby Animals” before my eyes glaze over and when Mary Tyler Toddler kicks and screams every time I try and wipe his face, I don’t feel very mindful or zen, but I would take a toddler over a Kardashian any damn day of the week.
Mary Tyler Mom 