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This one might be a little rough, so consider yourself warned. As so much we’ve seen and read and watched has been rough over the past few days . . .

Mark and I had that horrid conversation the other day, that I imagine many parents of the sick have had this weekend. It’s a rather gut-wrenching thing to bring up, but it inevitably comes at times like this: Which do you think is worse, losing a child to something like cancer or losing a child to something like a school shooting?

My answer was quick and unequivocal: School shooting, no question. Now let me be very clear — there is no good way to lose a child. NO good way. None of the options are remotely acceptable, nor should they be. But I have spent years envisioning what our last days and moments with Austin could be like and they’re pretty lovely. Not happy, not good, nowhere near okay. But they’d be filled with an overwhelming display of love. Every second would be spent holding and comforting, crying and remembering, loving and loving and loving.

I’m not stupid. I know it would be horrid. It would be painful and ugly and completely and utterly heartbreaking. But I would hold him. I would get as physically close as whatever machines and tubes he might be hooked to would allow, and I would wrap myself around him and hold him to the end, til he drew his last breath. And that would count for something.

The hardest thing for me watching and reading and thinking, endlessly thinking about these parents in Connecticut, was the fact that when they went to bed on Friday night, their babies were still lying on the floor of their classrooms, covered in blood and unmoved, untouched, as part of a crime scene. They never got to touch them again, to even see them again. Never, not even dead; the coroner said the parents were shown only photographs to spare them the agony of viewing the actual bodies in such a horrific state. But I think I would want to see it. I know that may not be wise, that it would be an unbearable image that I would never be able to shake from my mind. But so would the photo, really. I mean, is that truly any easier? I would want to touch my child’s body one more time. Touch their hair, stroke their cheek, kiss their lips, even cold and lifeless. I would not know how to go on without that.

Mark’s not so sure. He thinks the years of pain and suffering that children who die of cancer have to endure might be worse than the single moment of fear. He may be right, if you’re only thinking of the one who dies. I suppose he is right if we’re thinking only of the victims. Those children on Friday did not suffer long. But their parents will suffer forever.

I choose holding.

I was going to post about Halloween today — with pictures of the boys in their various costumes: the packaged Target variety for trick-or-treating (which has been postponed until Sunday)and the we’ll-indulge-Mommy’s-crafty-side variety for Storybook Character Day.  But it all seems a little inappropriate in light of the destruction and suffering being caused by Hurricane, I mean SuperStorm, Sandy. I realized this when I opened my email Tuesday morning to find a message from a local store announcing their “Sandy Shoe Sale!” and I thought, “Really? . . . You’re drawing in customers for shoes when people have lost their homes and livelihoods. Really?” I suppose veterans must feel the same way about the inevitable sales associated with their assigned day. (I’m less worried about offending ex-presidents with February mattress sales though.) And it of course reminded me of this ever so poignant (and rather depressing) Facebook post:

Funny Thanksgiving Ecard: Black Friday: Because only in America, people trample others for sales exactly one day after being thankful for what they already have.

So instead of writing about our long lazy day off school on Tuesday (yes, we had our first official “Hurricane Day” due to high winds, downed trees and lack of power throughout Northeast Ohio), I can’t help but think of those suffering who were already suffering. Childhood cancer is the place my mind automatically goes, regarding hurricanes and anything else. And so I find myself thinking about all those kids and their families who believed they were already dealing with their life’s hardest thing. And how much harder it suddenly got on Monday night.

All those kids and their families who’d been holed up in hospitals for chemo and surgeries and stem-cell transplants, parents traveling back and forth between home and hospital, juggling work, other children and their sanity. And suddenly, there is no home, or the other kids have nowhere to go because schools are closed and they certainly can’t come into the hospital in the middle of cold season, with their snotty noses and hacking coughs. I think of the patients who were already in isolation due to stem cell or bone marrow transplants, living in a veritable bubble, who suddenly have to be evacuated through the cold and far-from-sterile streets of New York City to another, over-crowded, unfamiliar hospital.  I remember back to the days following both of Austin’s kidney-sparing surgeries, the first in early October 2007 and the second in December 2009, when he had to lie so flat on his bed during recovery that he was actually strapped down. Restrained, with velcro strips attached to the bottom of the bed. There was a medical reason for this, of course: his kidney had to “settle” after being so thoroughly manipulated. But all I can remember was the overwhelming longing I had to hold my baby while he cried out in pain.  I just wanted to pick the boy up and rock him in my arms, the single place (then as now) that he feels most safe. And I was unable to do that.

So today, I think of Austin and the others like him, both young and old, who are rendered completely immobile following their complicated and risky procedures, being moved down stairs because elevators are out of order and placed in ambulances to traverse the city through puddles and bumps and twists and turns. And I wonder how much new suffering can be piled on the old suffering.

But I don’t mean for this to be such a downer. I actually mean to say that this moment, like so many others, makes me feel lucky. And on the cusp of the season of gratitude I hope we can all step back and acknowledge how deeply fortunate we are and how truly rich our lives, on most days, in most weather, are. We have friends and family, a roof over our heads, health and mobility, choices and freedom, stores with shelves full of food and gas stations with tanks full of fuel, heat and running water and electricity.

And to those who don’t have some (or any) of those things right now, I wish you this: a good sense of humor, a deep well of patience and, above all, hope.

Friday was Austin’s last day of preschool. Ever. So, of course, here’s the obligatory playground photo, along with his previous two Last Day photos:

It’s bittersweet to leave St. Paul’s since it’s been such a major part of our lives for the past six years.  Braedan’s first official day of preschool (after a good two weeks of orientation) was September 21, 2006 … the day Austin was born! So, from that moment to this moment and for every insane moment in between, we’ve been members of that school family. It has spanned all of Austin’s life so far and hopefully the entirety of his cancer, start to finish. It was only fitting that he ended two days after being declared officially and most definitely cancer-free.

As I think back over these past few weeks, I am awed, as I have been so many times before, by the kindness and intense emotional investment of all of you. Your tears and your hugs, the very thoughtful gifts (the dragon-slaying StoryPeople print from the Sweeneys and the key chain featuring my double rainbow image from Becky being my top favorites), your messages of hope and sadness, faith and joy, sustained us through this otherwise heartbreaking experience.

Knowing that you’re out there and that you care so deeply about us, about my child whom some of you have never met, means an enormous amount. I regret that I am never able to properly thank you, but know that I feel you and am fully aware of you. I read the name of each “Like” on my Facebook updates with gratitude and satisfaction (and sometimes surprise). In fact, as Mark and I sat out on the porch last Wednesday with our champagne, we both had buzzing phones in our laps, constantly updating one another with the latest messages of love and relief.

I loved that my brother told me that every time he went anywhere on Thursday or Friday, he was greeted with high fives and hugs, random people congratulating him on his nephew’s good health and even shouting it from the side of the road as he drove past. This has been such a community saga in so many ways, as you’ve followed along beside us for all these years, crying with us, wishing with us, celebrating with us.

(And speaking of celebrating with us, we are going to finally throw a big-ass party and everyone is invited. But we must gather our strength first!)

This round, if you can call it that, was interesting because it was the only time in all of our years of cancer that I felt like it was truly unfair, the first time I ever felt like, “Why me? Why us?” I know it sounds crazy that I hadn’t ever said that before, but — as much as I hate childhood cancer and as much as I’ve raged against its presence in our lives — I also know that it exists and someone has to get it. Someone has to hear those dreaded words, “Your child has cancer.” So I always sort of figured, “Why not me?” I saw no reason I should be exempt from being dealt such a hand. I’ve been given so much, am fortunate in so many ways … why shouldn’t this be my thing?

But this last time, I finally felt this just isn’t fair. We have done it. We fought, hard, and we succeeded. Austin does not, did not, deserve to have to fight this battle yet again. It would have been too much. It would have been, for the first time, completely unfair.

As my brother said, it just felt (for lack of a better term) karmically wrong. Like it just shouldn’t be. And, of course, lucky us, it wasn’t. It isn’t.

At the Family Connections benefit a few weeks ago, right in the midst of our darkest days, a friend told me that I so deserve to have the universe treat me with kindness. Of course, we know that the universe just doesn’t work that way. Bad things happen to good people (and good things happen to bad people). And suffering is not fairly or evenly distributed. But I agreed with her. I really believed at that moment (and in this moment) that the universe should treat me kindly. That I deserved it.

And most of all, more than anything, that this boy deserved it:

And this (toothless) one too:

I was awakened Friday morning at 6:23 by the robocall from our school district announcing the fifth of our five allowed Calamity Days, for another seemingly-out-of-the-blue overnight snowstorm. When I logged on to Facebook to publicly announce my distress at yet another day cooped up with the kids when I thought I might actually get something done (because that’s what we do with our distress these days), I discovered that my “calamity” paled in comparison to what was happening in the rest of the world.

After watching the computer and TV spew forth new images of death and destruction all day, I was struck my how small we all are in the face of, well, in the face of death and destruction. And yet, how strong and powerful we can be at the very same time. That night, Mark and I rented 127 Hours, the positively stunning true story of hiker Aron Ralston. The next night, we watched Charlotte’s Web with the boys. I know it seems strange to lump these disparate subjects into one narrative, but they seemed to come together in a jumbled and sad and beautiful way. A way that reminds us to appreciate all that we have. To notice how much each small thing matters. The tiny miracle that is the spider spinning its web. The child who believes she can make a difference by fighting for what is just. The strength found deep deep within, when no other strength is left, to cut off one’s own arm.  Out of a simple and sheer and unstoppable desire to live.

Having seen and experienced suffering in the up close and personal way that we have over the past three years gives me an unshakable and indescribable affinity with the suffering of others. I’m not saying I’ve been there, because our suffering is minor compared to that of many, but I do feel like I can recognize it, like I get it.

Of all the images coming out of Japan right now, the ones that show piles of cars and trains and airplanes, or crushed houses, or huge roiling waves of debris, are all breathtaking. And yet, none of them are quite so moving as those of the toddler standing alone crying for its mother, or the four-year-old stoically being tested for radiation by a masked man, or loved ones desperately searching the lists of names taped to the walls.

The moments big and small, personal and national in scale all converge together in one great picture of humanity. The suffering one small boy in a hospital bed, the suffering one young man trapped by a boulder. The suffering of a neighborhood, a state, a nation, a world. And the beauty and strength and grace of all those fighting to move beyond it. To survive one more day.

There is no brilliant new wisdom for me to impart except this: Calamity days or not, we hold ours tight. Hold yours tight too.

Austin’s appointment this afternoon with the orthopaedic surgeon went well.  We soaked his hand in sterile water and peroxide until we could peel the bandages off and the doctor was quite pleased with how it looked. He could tell right away from the way Austin was holding his fingers that there was no nerve damage (phew) and said the skin tone looked good and pink which meant it was already reconnecting (phew again). Austin, yet again, has ended up extremely lucky in his own extremely unlucky way.

Stitches can be removed in a week, although the doctor did caution that the nylon kind used in the ER will be painful to remove.  Not awful, but at least a pinch which will certainly get tiresome when there are 42 of them. He even said he was going to call the ER to tell them not to use that type with kids anymore.

By the way, you’ve gotta click directly on the photo below to see up close the full extent of damage.

Thanks for all your comments, both here and on Facebook, which fully convey the horror and commiseration that such a story deserves. I heard from at least three separate people who said they read it out loud to a group to much gasping and groaning. We too felt horrified as we watched this all unfold and were weighed down by a deep sense of the injustice of it. Especially because it had happened on Austin’s requested outing, his special celebration, the thing he’d been awaiting for so long.

But at the same time, Mark and I were both slightly relieved (only slightly) that it was Austin forced to endure this and not Braedan. Braedan is marvelous in many ways, but tolerance for pain is not one of them. He has, however, encouraged all of us to eat (and color) with our left hands until Austin regains use of his right (coloring is easier than eating). Another grand and mature display of brotherly affection between the endless bickering.

And I agree that at least this falls within the range of “normal” little boy accidents but I also agree that we should be exempt from such things. In fact, I hereby apply for our official exemption and can write a powerful and convincing essay to the universe describing exactly why my family should no longer be subjected to such “ordinary” calamities as broken arms and bicycle accidents, and most especially not such major calamities as teenage car wrecks or middle-aged heart attacks.

Now I know (oh, do I ever) that suffering is not evenly distributed but I do indeed think we’ve had enough.

August 2020


August 2020