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Over the past week, I’ve been called an inspiration, a powerhouse and — my personal fave — a force of nature. While that all makes me feel really, really good, this is not a one-woman-show, people. There is an army of volunteers who stand behind me and beside me without whom our event could never happen.
First of all, the barbers. They are on their feet shaving head after head after head for hours on end. They hunch over the little kids and let the very littlest stand up in the chairs. They calm the nervous shaking bodies and they comfort the crying. They laugh and they cheer and they do it with style.
So, a most enormous and heartfelt THANK YOU to Alex Quintana and his crew from Quintana’s: Theo, Mike and Jessica.
And, of course, to the fabulous Shawn Paul, aided and abetted by Bethany and Angela.
Thank you also to Rachel and Megan from Kreate and Rick, Laura, Racheal and Caroline, without whom there would be no bald heads (and what would be the point of that?).
Thank you to my tireless Treasurers and Registrars: Becky, Ann, Christie, Nancy (mom), Mark (honey), Jennifer, Julie, Julie, Kristy, Brenna, Ashlie, and Melissa. No one could check in and no one could give money if it weren’t for your hard work (and what would be the point of that?).
Thank you to everyone who worked at the Bake Sale table, especially Shari, Sheryl, Joe, Simon, and Logan, and of course, to everyone who baked for the Bake Sale, even though I have no idea who you are or what you brought. When I headed over to start emceeing, there were maybe two items on the table and when I finished four hours later, there was only one item on the table and I asked a volunteer if there had been any food at all. “Oh yes!” she assured me, and she must have been right because it brought in an additional $338. Nicely done on that!
Thank you to Simone Quartell for donating the American Girl Doll and to Nancy, Nicole, Kristi and Amelia for selling raffle tickets. We made one little girl very happy, plus raised another $478 for cancer research.
Thank you to anyone and everyone who stepped in and did jobs small — sweeping up all the hair off the floor (Nancy and Caroline) — and big — taking all the beautiful photos which you will soon get to see (Dallas and Sagi).
Thank you to the City of Cleveland Heights for so graciously hosting us year after year.
Thank you to Jason for helping me celebrate my own knight in shining armor, Mark, as he was inducted into the Knights of the Bald Table. I think your bagpiping skills served a recruiting tool for next year and the year after that as we now have lots of little boys (and girls) eagerly awaiting their own knighthoods.
And, of course, without question, the biggest, deepest, most well-earned THANK YOU to all the men, women, boys, and girls who shaved their heads or donated their locks on behalf of sick children. The entire room was overflowing with raw and honest examples of generosity and kindness. The incredible bravery of our shavees was matched only by their pure joy at having done something so special.
This is a composite of kids from Team Fairfax centered around Becca, in whose honor they all shaved. And, yes, those are four GIRLS in the pics on top, demonstrating the truest meaning of friendship. Braedan happily reported that no one was made fun of at school today (and good thing because if they were, I would have marched my ass in there and gone house on those kids whose classes I spoke to all day Friday) and that they were congratulated by many, many, many. He feels like they’re all part of something bigger, like they’ve shared an important life experience that has brought them closer (“even,” as he noted tonight with some amazement, “the girls”). It is a powerful lesson these children have learned together. And I am so glad to have been part of it.
I have a thousand other stories to tell and about that many photos to share so check back in the next few days. But for now, I simply say Thank You.
I’ve been thanked a lot in the past 48 hours. By my kids’ teachers and the parents of their classmates, by friends, neighbors, fellow Heights grads who’ve since moved many states away, random people I had no idea were in favor of this issue. And while all that feels good, the thanks really go out to you. To every person who dropped lit, toured the high school, made a phone call, forwarded an email, donated money, displayed a yard sign, read our words, listened to our stories and came out to vote yes on Tuesday. I thank you.
This unprecedented victory (truly: I do not remember a time when a school issue has passed in this community with 59% of the vote) has taken the work of many dedicated individuals and groups, and the trust and faith of thousands, and it means so very much. I am proud, I am thrilled and I am exhausted. There’s a part of me that wishes we never had to run this sort of campaign again. That the state legislature would take up an issue they’ve ignored for far too long and finally, once and for all, fix the way we fund our schools. I wish we could take the energy, dollars and endless hours people put into these campaigns and instead direct it to the schools themselves: fund a field trip (or several) with those donations, turn the hours of lit dropping into hours reading with kindergartners, use our passion in productive ways right in our own buildings. But that’s not how this works, unfortunately, and in a find-the-silver-lining sort of way, we’re lucky for it.
We are lucky to spend two months every couple of years pounding the streets in support of our community’s children and they are lucky to see it. We are lucky to engage in meaningful conversations with so many people, friend and foe, and to make new connections and new friendships in the process. We are lucky to read and hear the words of praise that so many of our peers have to offer our district’s students and teachers. While there is incredible contention around every school bond issue or levy, there are also many moments of unequivocal celebration of our schools. For me personally, it means so much to hear from my neighbors and friends with children in private and parochial schools, to have them ask for yard signs or hear them say that they always believe that public schools should be a strong option. It means so much to meet the parent leaders at other buildings and have us work together toward a common goal. It means so much to see Facebook friends in Indiana and New Jersey changing their profile pictures and updating their statuses in favor of Tiger Nation. It means so much to connect with elected officials and candidates on a shared vision.
There are many lessons to be taken from this victory, not the least of which is that residents seem to want their leaders to work with their schools, not against them. I do not think it’s a coincidence that the top two vote-getters in the Cleveland Heights City Council race were the two who endorsed and campaigned for Issue 81. Nor do I think it’s a coincidence that the solitary candidate in University Heights supporting this issue garnered the most votes from that city. The time is now for the two cities to come together and make us all stronger by engaging with and supporting our public schools. The citizens want that. The citizens need that.
There is much work to be done (and I’ll be writing about some of that soon). We have many difficult decisions ahead of us as we guide our leaders and especially our students through the upcoming plans and transitions. But for now, for today, I feel only lucky.
And I thank you.
I worked pretty hard to keep my political commentary off the blog this year, hence the recent scarcity of updates. (Of course, if you’re my Facebook friend, you know I certainly didn’t hold anything back there!) Today’s post is not specifically about politics, although it does contain some of my political views, which should come as no surprise to those of you who’ve been reading me all along. My message here is not about health care or elections or even voting, but it is about the power of one voice.
On the morning of Election Day, I posted this photo and comment on my Facebook page:
It got an awful lot of Likes awfully quick, but the very best thing that happened as a result (besides that now no one ever will be able to tell this child he doesn’t qualify for health care) was that it was shared by an old student of mine, now a sophomore in college who wrote, “Thank you, thank you, thank you to my 4th grade teacher, Krissy Dietrich Gallagher, for not only being the first person to teach me about the true meaning of democracy, and the power of one voice, but for fighting for her children no matter what the stakes are, and now taking strides to educate others about the right to health care. You are amazing, Mrs. Gallagher.”
How about that, huh? Now I’m not sharing that here just to give myself a public pat on the back (but it does make me feel very very proud and I did read it aloud to anyone who would listen that day), but to encourage all of us to tell the people in our lives how we feel about them.
That favorite teacher of yours? Find them and let them know how they influenced you. That neighbor you see out running early each morning no matter what the weather? Tell him you admire his dedication and drive. Even the little things, like an extra friendly cashier at the store … tell them you appreciate their smile. I can remember cringing as a teenager when my mother would compliment total strangers. “That color looks lovely against your hair,” she’d say while I’d roll my eyes and try to disappear behind her. But just think about how much it would make your day to hear something like that. It’s so easy, so simple, but it really would make a difference.
I have a favorite teacher, and she might be reading this right now. But it’s a been a while since I’ve told her that. And I’ve never told her that each time I create a new log-in for a website and have to answer a security question (you know, what was my grandfather’s first name or what city was I born in), I choose “Who was your favorite teacher” and type in that long last name that was once a fourth grade spelling word for our class. And I should tell her (I’m pretty sure I just did!) because I would be thrilled to know if one of my old students was typing in my name.
I know many of you are already doing this with the 30 days of Gratitude, where you publicly list all you are thankful for each day on Facebook for the month of November. So let’s all do that, Facebook or not, November or May. We’ve spent the past six months arguing with each other, so let’s move on to thankfulness and appreciation. We all have a voice and each of our voices has power. Let’s use that power for good.
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:
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.
What I really wish I had said out loud to all of you on Saturday night and what I have felt in my heart since Austin’s first diagnosis with cancer, five years ago yesterday:
On July 30, 2007, our near-perfect world was flipped on its head with the discovery of five tumors on the kidneys of our ten-month-old Austin. There are so many analogies we’ve used to describe our long and complicated journey with pediatric cancer; the first was that we felt as if we’d been plunged into a foreign land, complete with its own language and customs, its own definitions of “normal” and “okay,” its own hierarchy of authority. A world that we never intended to visit and a world from which we had no clear way out. We’ve also used the battle analogy, a common one for cancer patients, best described here in Fighting Words.
But my favorite and the one most fitting to my life is the marathon analogy. Mark and I, and Braedan and Austin, were forced to run a marathon for which we had not trained. In fact, we had no intention of running anything at all until the very moment we found ourselves standing at the starting line. And this was no ordinary marathon; this one followed no accepted and enforced rules. The course was changed on us numerous times — we’d come around a corner, usually after a particularly grueling hill, and we’d expect to see a finish line or at least a halfway mark, but nooooo, it had all been moved. Some evil race organizer had switched the mile markers and moved the finish line, over and over again. We never knew when to conserve energy or when to kick it in high gear. We never knew how much more we’d have to take and how horrible it would be.
Every time I’ve run a marathon, I’ve put my name on my shirt. This is a very strategic and effective move: I want people to cheer for me. No, more than that, I need people to cheer for me. When my legs get tired and I wonder how on earth I’ll be able to run one more step, let alone nine more miles, I need to hear some stranger on the sidelines call out my name, “Go Krissy! You can do it, Krissy!” And I do. That one cheer makes me pick up my pace, I hold my head higher and I keep on keeping on.
I put Austin’s cancer on my shirt. Every day, on the Carepage and then the blog, I wore it emblazoned across my chest, for all the world to see: this is what’s happening, this is what we fear, this is what we need, this is what we hope. I did it not because I wanted you all to cheer for us, but because I needed you to. I needed you to know what we were going through each step of the way so you could go along with us. And go along, you did. You cheered wildly when things were good, you pushed us along when things were rough. You held us up when we thought we’d fall over, you helped us choose our way when the course pointed in two completely different but equally terrifying directions. You even offered to run parts for us. You said, “Here, rest, just for a moment, just for a mile. Let me hold this burden for you.” The rules don’t allow that sort of thing, in running or in cancer, so instead you ran along beside us. And when we couldn’t possibly fathom taking one more step, you told us we could, and we did. You told us we were strong and that made us strong. You told us we would make it and look, . . . we made it. We crossed the finish line, with arms held high in victory. This race is finally, finally over. There may be another race in our future, but we hope to be better prepared for that one. And no matter what, we know you’ll be there cheering yet again.
We made it. And you were there every step of the way. And for that, we thank you.
There were many times over the past five years when I was struck by the incredibly kind — and often completely random — outpouring of support we received from our community. Moms I’d never been introduced to would offer me tearful hugs in the hallways of the preschool. People I hadn’t seen in years would drop meals off at our house. Old friends my kids had never met would offer to babysit or take Braedan on an outing when we were in the hospital and I’d have to politely turn them down because no way was I shipping that boy off with anyone he didn’t know. People would tell me that they think of us every day and pray for us every night and cry for us, wish for us, hope for us. Sometimes, I couldn’t help but think, “Really? You do?”
But then tragedy strikes elsewhere and I totally get it. The shoe is on the other foot as I find myself thinking day and night about the woman who lost her husband completely unexpectedly a week ago. I’d known her a tiny bit when our oldest were babies and then I’d seen her at the grocery store every now and again. And then our kids were on the same baseball team this spring when, suddenly, she’s on my mind nonstop. A widow just my age. With three little kids. So I offer to pick up her boys and take them to baseball practice even though I barely knew their names a week ago. And I sign up to deliver a meal. And Mark asks me to run by her house to make sure her lawn doesn’t need mowing.
And then there’s another family we know, whose son is slowly dying after a brutal ten-year battle with cancer. And I find myself sharing their story and getting choked up as I repeat over and over again how damn hard they’ve fought. How endlessly long and endlessly hard they’ve fought for all these years . . . and now there’s an end. So I obsessively check their Facebook pages for the latest news, glance down their street as I drive past like it will tell me something. And I wonder — am I just being nosy? Is this rubbernecking at a car accident? But I feel such a strong need to know so I can … what? Drop off more food? Send a card?
I understand now. I understand how you all felt — both hopeless and hopeful, a little bit guilty for your curiosity, for taking such an intimate glimpse at another family’s suffering, and yet consumed by it. I know why you followed us, sometimes quietly, with such consistency, for so many years. I understand the cookies and the muffins and the casseroles and the coffee. I feel the drive to give that tearful hug. I get it. We all just want to do something. We want to somehow ease the paths of those in crisis. We wish that they could take that huge chunk of sadness they’re forced to bear and break it up into tiny, more manageable pieces. That they could pass off those pieces to their friends and neighbors and, yes, to mere acquaintances and probably even total strangers. We could all handle just one small piece of their sadness, that wouldn’t be too much. We could just quietly hold on to it for them, to lighten their burden, and maybe trade a little piece of our own strength or joy or peace.
We can’t, of course, but we can want to. That wanting is worth something. It was worth something to me at least. And hopefully it’s worth something to them.
It was wonderful.
In addition to all the time I’ve spent preparing our final paperwork today, not to mention being distracted by the continuous updates and beautiful photos posted on Facebook, the real reason I haven’t updated yet is that I don’t even quite know where to begin.
I guess I’ll begin with the most obvious words: THANK YOU.
Thank you to absolutely everyone involved in every way. Thank you to my tireless volunteers, the beautiful registrars who welcomed everyone to the event: Becky, Ann (Austin’s old nurse practitioner, who’s not old at all) and my mom. Thank you to the brilliant and trustworthy (and also beautiful) treasurers who collected all your money: Julie, Brenna and Mark.
An extra thank you to Mark for doing every single other thing I asked of him, including not complaining about the state of our house over the past week or so. Instead, he up and mopped the kitchen floor on Friday. Love that man.
Thank you to the happy faces who sold (and gave away) the delicious treats from our Bake Sale table: Betsy, Luci and Peg, and my mom and dad. And thanks to the talented bakers — I don’t even know who made all of that food, but everything I saw (or tried!) was fabulous. We made an additional $213 (thanks to people who read my sign):
Thank you to the City of Cleveland Heights, who were gracious and supportive and easy to work with, every step of the way.
Thank you to the endlessly hard-working women of Cut Hair Studio: Laura, Breanna, Mandy and Britney. You worked quickly and tirelessly and put everyone at ease.
Thank you to Dallas, who took all these beautiful pictures and many many more. I will upload them all over the next day or two to a public site so everyone can browse them and even order some if you want. Dallas, as with everything you do, these are just perfect.
Thank you to Balloon Bender Dave, who I never met but I could see him there in the back of the room entertaining the kids. Thank you to Faith and the kids from the MacConmarra Irish dance Academy, who drove all the way from Akron to show their moves and add a bit of Irish flair to our event.
Thank you to the Heights High Singers who got short shrift because we were so engaged in the head-shaving when they arrived that we simply didn’t give them the attention they deserved.
And now … now that I’ve warmed myself up a bit, now it is time to say thank you to the incredible and incredibly brave shavees. Oh, I wish Braedan were still awake because he’s my walking thesaurus and I don’t know how many times I can use the words wonderful and generous and fantastic and brave and, oh what else would he say? Maybe stupendous and stellar and spectacular… Inspiring and uplifting and moving. Heroic. You were all all of those things.
Kid after kid, some seeming much smaller than they had just a few days earlier, walking right up to those seats and hopping up and scrunching their little eyes shut as the hairs began to drift down their faces. They sat still, with very few tears, and let strip after strip of hair fall to the floor. And they were so proud; those bright clear faces, no longer hidden behind shaggy bangs, just beamed. They beamed.
So many parents told me what I already knew, that this was an incredible and rare opportunity for these kids, some as young as three, to truly make a difference, to feel the impact they’re having on the world. Those little kids impacted their world. That’s a big deal.
It wasn’t just kids, of course. We had several adult shavees, including a couple of fathers who shaved alongside their sons, beautiful images of families doing something big and important side-by-side (which is exactly where we should be when we do things big and important).
There was a sweet older man who stopped me on the way out to say that he’d sent a message to his brother to tell him what he was doing, only to hear back that the brother had already signed up for an event wherever he lives, somewhere like Florida, without knowing!
And, of course, there was Kristi. I knew it would be a big deal, for me and for everyone there, but I can never quite predict which moments are going to get me. This moment got me. As I started to introduce her, right in the beginning because she was afraid to wait around too long and had requested an early slot, I just lost it. I couldn’t even begin. I pulled it together but I’m not even sure what I said, except for leading the crowd in a brief — but I hope rousing — round of “Glaaaa-sier! Glaaa-sier! Glaaaa-sier!”
I know that I did say what a hugely powerful statement she was making to all the young girls gathered there, especially her students. In fourth grade, they’re right at that age when physical appearance starts to take on an enormous and often unfortunate value in their lives. Here was a role model telling them that there are more important things in life than having nice hair:
I know for a fact that at least one of these sweet girls is thinking seriously about shaving her head next year.
Now that was the only moment, nope, not at all. As you know, there was a woman, a fellow Fairfax mom, who shaved her head on Austin’s behalf two years ago. You can read that story here, because that was definitely another St. Baldrick’s high. This year, her three sons, in second, sixth and eighth grades, shaved their heads:
As soon as they’d finished, I had turned away from the seats for one brief minute, when Mark came and tapped me on the shoulder, urging me to look back. There, scrambling into the barber’s chair, all eager and certain, was their little sister, sweet four-year-old Leah, pigtails and all. She had been toying with the idea of shaving over the past two months, one day she’d want to join her big brothers and next door neighbor, the next she’d rather be Rapunzel. But after watching her three heroes and then seeing Kristi shave her own head, well, that did it … Leah was in.
And, if you can believe it, that’s still not all. There was a mother-daughter team who shaved together this year for the second time, in honor of their little cousin, who lost her battle at age two. Well, it wasn’t until I announced them and mentioned the girl’s name that Ann, the “old” nurse working the Welcome table, realized she had treated that girl. Oh, there were lots of tears and hugs following that one. Peg, the mom, had emailed me a few weeks ago to see if I knew of any children who had survived cancer who might help shave her head. Uuuuhhh, yeah, I think I know one of those:
What a day. There’s still more, including countless more pictures, and links to all the media from yesterday.
But, for right now, all I can say is THANK YOU.
In this household, every day is a day of thanks giving. Not that it’s all hand holding and laughter around here (I say after sending the kids to their respective rooms so I can cook for five minutes without breaking up fights), but we are endlessly and eternally thankful for all that we have.
First and foremost, I am thankful that every time someone asks me how Austin’s doing, I can report that he is X months cancer-free (now nineteen) and can add, “the longest stretch without cancer in his entire life.” And I am even more thankful that each time I say it, he’s one more hour, day, week, month cancer-free.
I am thankful that, deep down inside, under the layers of resentment and rivalry, my boys love each other with intense ferocity (and that they still dress alike voluntarily!).
I am thankful that Braedan is earning a reputation as the boy who says Thank You.
I am thankful that both Mark and I still have both our parents in our lives.
I am thankful for a marriage that is, as marriages go, relatively easy: one filled with mutual respect and comfort and support and encouragement and laughter and love. And that in addition to taking care of the lawn and the shoveling, he’s also been known to clean the toilet or mop the kitchen floor, without being asked.
I am thankful for delicious food — yum.
I am thankful that I can do 100 burpies in a row without stopping. Ok, I’ve only done that once and I didn’t like it very much, but I’m still thankful I’m capable of it. (And if you don’t know what burpies are, be thankful for that!)
I am thankful for the extremely mild weather we’ve had this November. Yay for sunshine — we Clevelanders totally deserve it.
I am thankful for strong coffee, good wine and an occasional glass of cold water.
I am thankful to all of you who keep coming back and reading my so-called cancer blog, even when I focus more on the mundane aspects of parenting and home remodeling more than the life and death aspects of childhood cancer.
I am thankful to no longer share my house with an endless stream of random laborers.
I am thankful for dresses with pockets so I have somewhere to hide my insulin pump.
I am thankful that the voters of Cleveland Heights and University Heights stepped up despite tough economic times and supported public education.
I am thankful to have so many venues in which I feel comfortable speaking up. And I am thankful that my voice is often heard and listened to.
I am thankful for brothers who challenge me and love me, even if they don’t always agree with me! (Which is strange since I’m always right.)
I am thankful for friends to laugh with and cry with and share all of life’s important and unimportant moments with.
I am thankful that we have only spent one single night –and not even a whole one, really just a few ER hours — in the hospital over the past year. And I’m thankful that one day, I know we’ll be able to say we’ve gone an entire year without a single hospital overnight. (Austin deserves at least one year like that is his life.)
I am thankful for the scientific research, modern medical technology, and brilliant doctors who saved my child.
And I am thankful for the kindness, caring and love that saved the rest of us.
I am thankful for today, and I am thankful for tomorrow.
Here is the latest video from Kelly Corrigan: the thank you note that moms really want and really deserve from their children on Mother’s Day. Of course, few of us will ever hear such words pass our kids’ lips (or at least not until they have children of their own!), but we can at least hope that somewhere deep inside their beings they feel them. It’s not that we want them to owe us anything — not even thanks (although that would be nice) — but just that we all, as mothers, want our kids to be aware of how hard we try and how deeply we care and how much we love.
I’ve added a few of my own:
Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o’clock in the morning when I’m woken by some stranger taking my blood pressure. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun, like when you take a Tums right along with me before I eat my cheesy meals so we can have a “Tums race” or be “Tums buddies.” Thank you, mom, for always (or at least, often) packing the right lunch and snacks and books and toys to keep me busy through hour after hour and day after day in the hospital. Thank you for never failing to flush my PICC line even when it’s midnight and you’ve just drifted off to sleep in your warm cozy bed. And speaking of that bed, thank you for scooting over so I can squeeze in between you and dad when I feel scared in the night. Thank you for treating me like a regular kid and letting me climb the rock wall and fall down and get hurt even when my platelets are low and my legs are already covered with purple welts.
Thank you, mom, for not forgetting about me, your healthy son. Thank you for making sure I always have fun playdates and for giving me veto power over whose house I go to, no matter how desperate you are. Thank you for emailing my teacher at the last minute so I’m not too surprised by who’s picking me up on unexpectedly long hospital days. Thank you, mom, for waking up early to bake homemade bread for the Teacher Appreciation Brunch. And for running back home to get my library book on library day so I can check out a new one. Thank you for arranging for friends to take me swimming all summer even though Austin can’t get wet. And for sneaking yogurts into my lunchbox so I can eat them away from the watchful and (understandably) jealous eyes of my brother. Oh, and speaking of jealous, thank you for listening with respect and not getting mad when I say I’m jealous of him, even if it makes your blood boil a little. Thank you, mom, for making sure I know that I’m remembered and heard and loved.
And thank you to my mom for always managing to fit in a several-hour visit to the hospital every single day we’re there, no matter how busy you are. Thank you for shooing me away and sending me home even if Austin is screaming in your arms as I leave. Thank you for reassuring me that it will be okay and for always telling me how okay it was when I get back. And thank you for valuing my daily workout as much as I do and making sure I have time to go for a run. Thank you for loving every second you spend with him in your arms and for making it seem like I’m giving you a gift when you’re really doing me a favor.
Thank you, mom, for taking care of me when I’m sick.
And thank you, mom, for taking care of me when my brother is sick.
And thank you, my mom, for taking care of me when my son is sick.
Well. Wow. What a day.
I’m not usually at a loss for words (and I’ll surely manage to find a few now), but that was just a really great day.
Started off with me and Austin eagerly waiting through 50 painful minutes of the morning fluff on Fox 8 (my deep apologies to anyone else who also suffered through that — if you taped it, just save yourself and skip to the last ten minutes of the program, please!). But finally, there they were. First Mark and Dr. Letterio, sitting side by side with their half-shaved heads, talking about the importance of pediatric cancer research. And then, right when I thought the segment would end without Braedan getting his chance in the spotlight, they scanned back to the anchor table and there he was, sitting adorably on the anchor woman’s lap. And she looked just about ready to eat him up. With good reason too! He was breathtakingly cute on that screen, all big eyes and pretty face. I’m trying to find a link to it on their website but haven’t had any luck so far.
Then, by mid-afternoon, Mark and I and his dad were (wisely) in a taxi on our way downtown. A.J. Rocco’s was quite a scene — bottleneck at the door, people pushing their way through, sloshing the cups of beers raised high above their heads. It was reminiscent of my college years thankfully minus the bar smoke. It was part party — hanging out with friends and drinking beer, and part hospital visit, surrounded as we were by our doctors and nurses strangely dressed in street clothes, not a white coat in sight.
The whole thing had an emotional tinge to it: random people hugging and crying, bits of heartfelt conversation wafting up through the ordinary bar noise. I was honored to meet some of the members of Team Austin we didn’t know, shavees who had simply picked my child from among the others on the St. Baldrick’s site, in part because of his cute smile and in part because they wanted to find someone currently “in the fight” (is he ever). People who had never met us, for whom we were no more than a figment of the internet, but who nonetheless raised thousands of dollars in our name. And as I was gushing about my appreciation for all they did, they were likewise thanking me, telling me how proud they were to be part of this, how special they felt to be able to do this on behalf of Austin.
And then there was Cori. This woman had hair down to her waist, literally, to her waist. We don’t even know each other all that well, but she just signed right up, like “Why not?” On her St. Baldrick’s page, she mentioned how when you see a child fall down at the playground, you just go and help, no hesitation. Well, this was the same thing for her: We walk to Fairfax together and wait on that playground, rain or shine or snow (mostly snow) for our boys to come dashing out the door, our little ones antsy in their strollers. We’re “playground friends” as she says. So when Austin “fell down,” she helped.
And help she did. She hadn’t raised a huge amount online, a decent amount but nothing worth the length of that hair. So when her turn came yesterday and her name was announced, the MC asked for extra donations. A few of us walked around the bar with leprechaun hats outstretched for people’s cash. Now remember, most of the people there had already given in one way or another, either money or hair. But most hands managed to fish out their wallets and give some more, because she came up with a whooping five hundred dollars on the spot.
And everybody watched with bated breath as the barber sniped off huge chunks of ponytail to donate to Wigs for Kids. And everybody teared up as the buzzer started working its way across that suddenly short hair. And everybody cheered when she stood up on the chair afterward to show how beautiful she looked.
The MC was standing next to me as I was cheering loudly and turned to ask if she was a friend. “She’s shaving for my son,” was my answer at that moment. But my answer right now is, “Yes. She is my friend.”
And that’s not all. Less than an hour later, one of Mark’s colleagues, the other woman on our team, walked in. And her hair was only an inch or two shorter than Cori’s! So the hats were passed around again and I was thinking, “These people just gave, there’s no way they’ll give again.” But give again they did, handing over another $377. It made me feel a tiny bit guilty, these women with lush long locks willingly sitting on that stage, while I won’t do it and I’ve never even liked my hair! But I’ve suffered enough on behalf of pediatric cancer. I make my sacrifice every day. I’m keeping this hair.
Most of all I felt moved, touched, lucky. I don’t use the word “blessed” very often because it’s too religious for me, but I felt enormously fortunate. Fortunate that my life is so rich with generosity and kindness and friendship and love. That my husband and my children and I are surrounded by such an open and giving community. Yesterday made the heavy burden we bear feel, if not lighter, at least more tolerable. It made what should be an experience seeped only in negativity feel positive.
It made me feel full and whole and lucky. And so I thank you.