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Six years and three weeks ago (exactly), I sent out an email to friends and family informing them that Austin had been diagnosed with cancer. I was upbeat and hopeful, providing as many details as I could in that moment, all tinged with a misplaced sense of optimism for what we were about to endure.
My inbox was flooded almost immediately with replies conveying that same hope and optimism, all telling me that we would beat this, we were so strong, Austin was lucky to have us as parents to guide him through this, blah blah blah. Everyone meant well and I thoroughly appreciated their words, but after a while, the messages all blurred into one. Except for the singular and unblurrable response from my college friend in London, which read, “Fucking hell, Krissy, this fucking sucks.” And I laughed and I cried and I saved that message in cyber-eternity because it was the only one that captured what I was really feeling, what my heart knew but my mind couldn’t yet accept: this fucking sucked.
I have used those words many times over the past six years and three weeks . . . too many times, in fact. I have handed them over with as much kindness and comfort as I could muster to a friend whose mother was diagnosed with cancer too young. And another whose daughter was diagnosed with cancer too young. And to the friend who deserved the words most of all after her daughter was killed in a freak accident. And the woman whose husband died of a heart attack after an evening bike ride, leaving her a widow with three young children.
And then I used them yet again, just a few days ago, in a message to a woman I’ve known since Braedan was just a few months old, whose five-year-old daughter, about to start kindergarten at Fairfax, was diagnosed with a brain tumor instead.
Because, fucking hell, what else can you say to that?
I’m not going to tell you their whole story because the husband/father is doing that himself here, so eloquently I’m almost embarrassed by my own blabbering vulgarity. But not so embarrassed that I’ll stop, because if you think I’ve used harsh words before, they’re about to get harsher. I’ve been following their story pretty closely over the past week and have read through all the comments that appear on both parents’ Facebook pages. And they’re filled with hope and love and fervent fervent wishes for the best possible outcome. They are lovely and moving and raw and I’m sure bring some small but necessary bit of strength to the parents. But they are also filled with a falsehood, with a piece of conventional wisdom about illness that gets bandied about as if it’s undeniable truth and it is not.
It is this: that love will conquer all. Time and again, I have seen well-meaning people tell their downtrodden friends that their sick family members will survive because they are loved. Love will save them. Love is more powerful than anything, even, say, cancerous tumors.
I used to like this idea. I believed it and lived it myself the first time through. This was something I could do. I could love Austin back to health, that was one thing I could control. I distinctly remember strolling him outside the hospital one October night, mere weeks into our years-long journey, and thinking that my pure longing could actually save him, that my intense wanting, my unbreakable desire to keep him alive would do just that. And then I realized, with a jolt to my heart, how wrong I was.
Because they fell like dominoes around me. Those children who were nothing if not loved. Ashlie, Ariana, Emily, Seamus, Dylan, Olivia. Did I really think that if their mothers had wished a little harder, if their fathers had loved with greater intensity, if their circles of friends had prayed more frequently or more fervently, that those children would have somehow survived? That is not how it works. Love isn’t enough. It helps; it makes the long days and weeks and months more bearable and much more pleasant. But it doesn’t save lives. It would take you mere minutes with Ariana’s mother to know that her love should have saved a small country’s worth of children. She loved her daughter beyond measure. And Seamus’ parents . . . are you kidding me? There could be no bigger love for a child.
But it didn’t matter. Because it’s not love that saves. And goodness knows, it’s not lack of love that kills (nice message to send to those parents, huh: if only you’d. . . ?). It’s not a question of worth or value or who deserves what. Because every parent deserves to send her sweet child off to kindergarten healthy and whole. And every five-year-old deserves to go.
So, no, it’s way more random than love. It’s just luck. Plain old luck, good or bad. Which is way out of our control.
Take a good look at this picture. Really, I mean, click on it and take a nice good look at the enlarged version.
Look at those faces — the delighted smiles, the obvious bonds formed over the course of a season playing side-by-side, the pride and (no doubt) exhaustion. Do these look like losers to you? They don’t to me. And that’s pretty darn remarkable because this photo was taken at 11:15 last night after the Rangers lost their twelfth straight game, a perfectly imperfect season without a single win in it. And not only did they lose all their games but, in most of them, they got trounced. The mercy rule was the only thing that got us out of dreadfully long innings in which batter after batter was walked all the way home.
They are a young team, clearly lacking the experience at kid pitch of their competitors. They struggled all season with finding a single player they could rely on for consistent pitching. One kid would strike guys out in one game and walk every batter the next. And their fielding was, let’s be honest, here, rather atrocious. All Bad News Bearish with balls rolling between their legs, uncertain hesitation at critical moments, and cringe-worthy overthrows while runners gained base after base. It was rough, on all of us, . . . rough.
But, it was also completely inspiring. Because these kids cheered like mad, encouraged along by their level-headed coach. They smiled and shouted and hugged each other after games. They patted each other on the backs for small accomplishments and big mistakes, and they learned one of sport’s — and life’s — hardest lessons: how to lose well. These boys and one girl are excellent losers and that is a skill that will take them far in life, buoying them when things get tough and humbling them when things go well. I can’t wait for the day any one of these athletes is on a team that crushes their opponent, because I hope they remember what it felt like to be that player.
And last night’s game — a single elimination playoff game in which they faced the number one seeded team — was positively spectacular. Because if our kids can’t field, they sure can hit. And they were on fire, with every single player hitting hard and hitting well. They had faced this team twice before: in a 24-0 loss to open the season and a 19-8 loss midway through. Well, last night’s final score was 23-19, a scramble-from-behind, messy and completely victorious loss (no, that’s not an oxymoron in this case, trust me). The game had tons of exciting moments, including our first and only and much-needed grand slam in the second inning in which we saw the score rise from 9-1 to 9-8. But my very favorite moments were smaller and quieter, as my favorite moments so often are: when one of our pitchers accidentally hit a batter in the foot (not an uncommon event in this league — the pitching gets a leeeeettttle wild) and as soon as the batter took first base, our guy ran straight over to apologize and make sure he was okay. And when one of Braedan’s best friends struck out to end the game and Braedan walked right up to put his arm around his buddy and assure him he’d done well.
These kids may have lost week after week, game after game, but they did it with their heads held high, with smiles on their faces, and with some of the best displays of sportsmanship I’ve ever witnessed. And I couldn’t be more proud.
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.
April 22, 1986 was a Tuesday. I had just finished last period gym class and was in the locker room with my 7th grade gang of girlfriends deciding whose house to go to after school. This decision usually involved three factors: whose house followed the same walking route as wherever our gang of boyfriends was headed, whose house had the best snacks and whose mom didn’t mind when her home was invaded by twelve giggling girls. (We did not travel light in those day.)
I, so often the ringleader, shook my head and said, “Can’t. I have a doctor’s appointment.”
“Again? You had one last week! Is this about that thing in your eye again?” asked one girlfriend referring to an unexplained stye the week before.
“No, my mom thinks I have diabetes.” I said this casually because I didn’t really think it could be true. I suppose if I had thought about it carefully enough, as I would years later, I’d have been able to admit that I wasn’t myself lately. I was tired and cold, lacking some of my usual tom-boy-but-girly-girl, jock-in-cute-clothing energy. I didn’t feel like myself. But I still didn’t think I could have that.
“No WAY!” Sarah shouted, suddenly all riled up. “My sister has diabetes. There is NO WAY you have it.”
There, she was clearly an expert. Pit her against my mother and her dog-eared Dr. Spock book. So what if I’d been chugging through the week’s supply of milk by Wednesday? So what if I’d gone from already thin to downright gaunt? Sarah knew what she was talking about.
But I parted ways with my friends and trudged on home where my mom and my six-week-old brother escorted me to our pediatrician’s office. I guess I wasn’t really surprised when he walked through the door, after checking the results of a quick finger prick blood test, placed his hands squarely on my knees and looked me in the eyes. This grandfatherly man, who I’d known all my life, now on the verge of retirement.
“Does diabetes run in your family?”
“Nope.” Still casual.
“Well, now it does.”
That was the first time a doctor’s words changed my life.
He told us to go home, pack a bag and head to Rainbow. All of this sounded fine to me until he said I’d be in the hospital for five to seven days. That was not okay. Chronic disease or not, I had a school dance to go to on Friday afternoon. And hospital or not, I had a boy to slow dance with.
But — doctor’s orders, so home we went and, while my mom fixed dinner for my brothers, I packed my bag with a phone cradled under my ear, calling as many girlfriends as I could manage. Most were shocked, one cried, my best friend’s brother thought I was kidding. More than one asked, “But what about Friday?” This dance was no small matter.
My dad came home from work early and we headed down to Rainbow Babies’ & Children’s, a hospital that would become my second home more than two decades later. The four of us boarded the elevator — 13-year-old me, consumed with the horrors of missing the school dance, my parents, consumed with the horrors of having a suddenly sick child, and my baby brother, strapped onto my dad’s chest in what we now know is a Bjorn but what they then thought was a “Snugglie.”
Now this next part I don’t actually remember, being as consumed as I was with above-mentioned horrors, but my mom told me about it many years later. The elevator door opened before we reached our floor to let on a boy, just about my age, except that he was in a wheelchair. And he was bald.
You know what they thought. My parents, whose world had turned upside down, who were overwhelmed with shock, fear and worry . . . you know what they thought. It’s what most of us would think. At least it’s not cancer. They leaned into each other, in their safe corner of the elevator, and they knew. They knew that we could do this. They knew that we would be okay.
And we were, but I’m not there yet. Minutes later we were settling into my room, answering question after question from doctor after doctor and nurse after nurse and intern after intern. And every single time someone new walked in, my mom would announce, unasked, unprovoked, that I had gotten my first period the week before. Can you say mortified? This could not possibly be relevant! I would scowl and hiss, “Mah-ahm,” turning that simple short word into two suddenly vicious syllables.
She said it hopefully, as if she actually expected some doctor to throw his clipboard into the air and exclaim, “Oh, that explains it! The ol’ first period-diabetes diagnosis mix-up again!”
No such luck there. Instead I stayed in the hospital for five days, learning how to test my blood sugar and count my carbs and administer my shots. My parents and brothers had to learn too, how to spot a low-blood sugar reaction and what to do about it, what it felt like to give and get a shot. We went around the room, first practicing with saline-filled syringes on oranges and then on each other’s arms. Take that, brothers, who were mostly concerned with whether or not they could still eat donuts on Saturday mornings.
But we all learned and we all made the necessary life changes and we took it in stride. I took it in stride. Right at that moment when I gaining some independence from my parents, diabetes just became another part of taking care of myself. It just became another part of who I was, who I am.
And don’t worry, I didn’t forget: The hospital granted me a two-hour leave of absence on Friday afternoon and my parents picked me up in the minivan and dropped me at my middle school for the dance. I mean, THE dance.
And yes, I got my slow dance.
If you were a fly on the wall in our house three weeks ago and then again today, you’d have trouble noticing anything different. Two little boys playing, tussling over toys, begging for jelly beans (well, there are definitely more jelly beans than there were three weeks ago!), two parents watching over them, trying hard to balance the easy fun with important life lessons. You may notice the older son whining a bit more and the younger one struggling to sleep at night. You may notice the parents looking a little more pensive or a little more tired (see above statement re younger son struggling to sleep at night). But you would never ever be able to guess the emotional turmoil, the seismic shifts in perspective, that had taken place in the course of fifteen days.
The good news right now is that the doctors seem to be considering this episode something other than a recurrence. “Residual tumor” I think is the way to describe it. It can be quite confusing for those of us not trained in oncology but it seems that some teeny tiny microscopic cancer cells were left inside Austin’s belly following the October 07 surgery. Now remember, that surgery removed four tumors and 40% of his kidney. And the surgeons were trying very hard to remove as little of the kidney as possible, so they may have left behind a few (invisible) cancer cells here or there. Those little cells would have then been treated by chemo for almost five months (which is why the tumor they removed last week looked like it had been through treatment) and then, ever so slowly, they would have grown (because Austin’s type of Wilms’ was mostly resistant to chemo) from teeny tiny almost non-existent cells to a one-by-two-centimeter tumor that finally showed up on a CT scan one year later.
This little fact (whether or not this is actually an official recurrence) is enormously consequential in terms of Austin’s longterm prognosis. The survival statistics for Wilms’ tumor recurrences are horrific, so awful that Mark and I only discussed them in hushed tones, as if to speak them aloud would have made them more true. I certainly couldn’t bring myself to type them here — it was all sad enough to begin with. But now that we feel a little safer, here they are:
Depending on which piece of research you’re reading and which category of Wilms’ you’re talking about, the five-year survival rates after recurrence range from 23% to 43%. Twenty-three percent. Or the good stuff, the research that we actually felt optimistic reading: forty-three percent! Basically, for every 100 kids with a recurrence of Wilms’ tumor, three-quarters of them die.
Not acceptable, not even close.
Imagine, god, just imagine if someone offered your child a sippy cup of juice and there was a 67% chance that it was instead a deadly poison. Or if your pediatrician suggested a new vaccine that kills kids 57% of the time. Right. You’d run screaming for the door. No parent should have to look at numbers like that in regards to their child’s life. That is not right.
But that’s where we were two weeks ago, that is the thought we lay down with each night, often with Austin asleep between us. That is the thought we carried with us through each day, trying to keep things as normal as possible, trying not to let Austin get away with hogging all the toys, trying not to yell at Braedan if he so much as looked sideways at his suddenly fragile little brother. There was a sense of desperation — how long will it take? How long do we have? But there was also a slow and reluctant acceptance. We simply had to face reality, we could not go on with our heads in the clouds refusing to see what lay before us. We were both, for the very first time since all this cancer business began, we were both starting to accept the idea, the possibility, the probability, that we might live our lives without him.
And now, suddenly, remarkably, we find ourselves almost back where we were three weeks ago. A little blip, a slight detour on our cancer journey. Austin is recovering, there is no treatment plan looming ahead of us (and cancer without cancer treatment doesn’t seem so bad), the official stats should be back in the 80% range. And life goes on. The boys are none the wiser: Austin is sore and Braedan hyper, but a few weeks from now, all will be well again in their world.
But Mark and I know. Mark and I will live with that feeling for a long time. Our time with him feels a little more precious, our hold on him a little more tenuous, nothing is certain, there are no guarantees.
That fly on the wall might not be able to see it, but we are changed.
In September 2003, Mark and I went to Boothbay Harbor, Maine for the wedding of his best Peace Corps buddy. I happened to be both six months pregnant with Braedan and one week shy of losing my beloved grandmother, so I was, to say the least, a little emotional. We were tooling around the town one day, looking in the little shops, when I stumbled upon Story People. Story People are these drawings of crazy, fantastical people with short “stories” written into the artwork. (In my opinion, the stories themselves are the artwork.) They’re poignant and funny, heart-breaking and beautiful, and they made me cry, right then and there in the store. Mark shrugged sheepishly and offered up my pregnancy as an excuse, but the guy behind the counter assured us that at least one customer each day cries when reading the Story People.
I bought this one and this one for Braedan’s nursery, and they now hang on Austin’s walls. They’re my favorite gifts for when people have babies or find the one they’ve been waiting for (I bought this one for Mark, who happened the be just the one I was waiting for). And then, following the death of one of our favorite fellow patients, I sent this one to her mother. I felt guilty about it afterwards because it was so heart-breakingly sad, but I figured there was no way for her to be any sadder than she already was and at least there was some small beauty in this. And sometimes some small beauty is all you have.
Today, I have another Story People print ready to hang on our wall. I actually bought it a year ago as part of a buy-three, get-the-fourth-free deal and was saving it to use as a possible gift. But I’ve realized that it fits no home more perfectly than our own. People the world over and throughout history have spent time, money and energy seeking out the extraordinary. Extraordinary adventures and accomplishments, extraordinary wealth and fame . . . but I have learned (the hard way) that it is the ordinary moments that make life beautiful. Today we walked to the grocery store, colored Easter eggs, blew bubbles in the backyard. Tonight we’ll make homemade pizza with the boys spreading the sauce and fighting over shreds of cheese, we’ll read books together and snuggle up before bed. We’ll kiss our children goodnight and head downstairs for a glass of wine and a brief hour of quiet. We will be ordinary people doing unremarkable things. And it will feel remarkably extraordinary.
This is the song that was used as the backdrop to Austin’s Miracle Story for the Rainbow Radiothon last fall. Sit back and listen to both, especially that line that says “Isn’t it exceptional how everything works out after all,” then wipe your tears and go hug someone you love. It is indeed exceptional.
Here we go again. We’re packing our bags, bringing Austin’s comfy pillows (which are so much better than the plasticky ones the hospital uses) and all his lovies, who he refers to as “my guys.” His guys include, among other assorted stuffed animals, Cookie Monster (“Cookie Mah-mer”) and Koala (“Kah-wa-wa”). This time we also have the single-cup coffee maker from Mark’s office, which will make mornings so much more pleasant — trying to carry a recovering toddler attached to an IV pole and a hot cup of coffee down the hall always ends up a tragi-comedy.
We’re feeling pretty good about this, although it carries with it all sorts of risks. Because it is a major surgery, they have to use those lovely words that my ears have heard too many times: “potentially life-threatening procedure.” But he is in excellent hands and we’ve done this before, so I nod my head and sign my consent yet again. There is also the possibilty that what they find when they open him up is worse than we thought and they end up removing the kidney as well. Austin would then begin dialysis and wouldn’t be eligible for a transplant until he’d had two years of clear scans. As you might imagine, you don’t want to stick a nice new organ in a potentially cancerous cavity. I try not to think too much about this as it is pretty unlikely to happen tomorrow and the thought of just beginning something so horrible after all we’ve (he’s) already been through is almost too much to bear. Almost.
We’re due there at 6am and surgery is set for 7:15. Mark and I will then wander around the hospital for hours on end, flipping through old celebrity magazines and checking email on our his-and-her iPhones. If all goes well and we can avoid the PICU, we should be back on Rainbow 2 by early afternoon, settling in for a one-to-two week stay.
So now is when I ask you to start wishing and hoping for my little Austin. You probably notice I don’t use the word “praying” even though a child with cancer must be what prayer is for. But it is not what I do. As I’ve said before, I am not a religious person and that is a very gentle way of saying that I don’t believe in God and never have and don’t imagine that I ever will. But I understand and respect that faith is where many of you find strength and comfort in times like these and I certainly don’t hold that against anyone.
I take no offense to whatever well wishes you want to send Austin or send up or send wherever. In fact, I am honored and touched by them. You can say Jewish prayers and Muslim ones, Christian, Hindu, Buddhist, it doesn’t matter to me. You can light candles or recite rosaries or dance under the full moon. I don’t know if any of it works, but if it makes people feel a little bit better, then that’s okay with me.
Mark was raised Catholic and although he is not practicing and we didn’t baptize our kids and he never takes me up on my annual Christmas Eve offer to go to church (I like the music), he still believes. I’ve never seen him down on his knees, but I am certain that he prays for his Austin. And I too offer up my wishes in my own way, usually by finding a bright star in the sky. That makes me feel a little bit better too.
So do what you need to, do what you can. Maybe all these wishes and prayers just float around in the universe, never making it anywhere, but I think the positive energy must be worth something. And it certainly can’t hurt.
First things first, the chest CT came back negative, which is positive. One sigh of relief. Also, we’ve scheduled our meeting with Dr Auletta (aka Jeff) for tomorrow afternoon, after which we should have at least the beginnings of a plan in place.
As for now, the boys are thoroughly enjoying themselves. Yesterday, my parents took them to the Great Lakes Science Center and they spent the morning jumping on trampolines and playing in the ball pit. I feel like we need to fit in as many of those kid-filled (and germ-filled) outings before the seclusion of chemo begins. I like to think that I’m fattening him up. I’ve been trying to do this literally, making all his favorite food and offering additional treats, in preparation for the inevitable weight loss he’ll soon experience. But I’m also trying to fatten him (and all of us) up with laughter and joy and time spent running around outside and seeing friends and doing all the day-to-day activities he so loves.
It’s like the little mouse in the book Frederick by Leo Lionni. Winter is approaching and all the other mice are busy getting ready, gathering nuts and leaves and food, and poor little Frederick just sits there, looking at the flowers and watching the sunset. Of course, the other mice get thoroughly annoyed with him and call him lazy and wonder what good he’s doing any of them, just sitting around like that. And then the long winter comes and they’re all together underground, eating their stored food and getting increasingly bored and impatient for spring, when Frederick appears on a rock and starts spinning stories, painting pictures in their minds of blue skies and colorful rainbows and bright flowers and glorious sunsets. And they’re all so thankful that he was wise enough to think ahead like that and prepare in such a wonderful and unexpected way.
So, that’s us, fattening up on love and laughter and sunshine. Speaking of, I’m on my way outside….
Life continues to move forward in the most normal way. Austin had a chest CT today and it was the first time in the past two years that any procedure went more quickly and easily than anticipated. We’d decided to try it without sedation since it would be so fast and he didn’t require any IV contrast. We brought him down to the basement of the hospital, to a room he’s been in dozens of times before but has never seen because he’s always been sedated. Well, this time he and Mark, who met us on a lunch break from work, were playing catch with his new bouncy ball while we waited. First patient up was Austin’s beloved stuffed Cookie Monster so he could see how it all worked. Then our little guy was on the bed, strapped under the “seat belts,” with Daddy on one side of the scanner and Mommy on the other, both holding his hands. The woman working the machine talked to him through a microphone, telling him to smile and “Say cheese.” Assured he looked handsome, the whole thing was over in two minutes. Mark and I actually laughed and said. “See? This is going to be a piece of cake.” If only.
We should get results from the scan this afternoon, which we fully expect to be negative (heard that before?). And probably more news and recommendations in the next few days.
So now he naps and I am back on the computer, getting my digital therapy through writing and reading your responses. The outpouring of love and support and kindness has been, yet again, overwhelming. Many of you have apologized, either for not knowing the right words to say or not being present to do specific tasks or for feeling paralyzed with sadness and fear. Please, no apologies, people. You are out there and we feel you. There are no right or wrong words, there is nothing specific anyone can do to ease this path for us short of just being there, wishing for us, hoping for us. That is what makes it bearable.
You tell me that I’m strong and then I’m strong, you tell me Austin’s a fighter and then he fights, you tell us we’ll survive and we survive. It’s good enough, what you do. Reading, wishing, hoping, praying, crying, sharing, whatever, it means something to us, even if we never have the chance to tell you one by one.
I got a message today that talked about the sharing of grief, and how other people were willingly shouldering some of the pain and the fear for us. It’s like a big trade-off: friends and family and perfect strangers stepping forward and saying, “Here, give me some of it. I’ll hold on to your pain and your fear and your sadness and in return, you can have some of my strength and my energy and my hope.” A give-and-take, you are doing your part too.
I’m not particularly militaristic. Well, I’m not at all militaristic, but the battle analogy is just too apt to let go. We are preparing for battle yet again and our army is gathering behind us. Some of you will be on the front lines, engaged in the day-to-day combat. Some of you will be behind the scenes, cooking and cleaning (literally!). And some of you might just be the old-school colonial-style drum majors and trumpet blasters, rousing us for battle, cheering us on, creating enough noise to drown out the heart-thumping fear.
And you all have signed up for this, volunteered. You could walk away, say, “No way, I can’t even follow that story anymore. It is too damn sad.” But you don’t do that. You keep coming back for more, re-enlisting, another tour of duty. And you put yourselves at risk, right in the crossfires, because the more you read, the more you care and then you too stand to lose. I gave our babysitter an out the other day, told her she didn’t have to do this if she didn’t want to; she could cut her losses before things get too ugly. But she refused, stood her ground, right here beside us, wedged between Braedan and Austin, ready to go wherever this road takes us.
Austin’s Army is gathering, standing behind us and around us, ready to fight.
When I looked out the window this morning and saw a fine dusting of snow covering our cars and the top of the swing set, I shook my head and started to say, “I really thought it was over,” but didn’t quite finish that statement because what do I know about over?
I do know we’ve been making the most of our time together, before the battle begins. We went to the Natural History Museum on Saturday, let the boys climb on the dinosaur outside, watched the otters dancing playfully in the water. We took a hike around the duck pond yesterday, sat on some rocks as the geese swam by. Today we went on a “train ride,” about six stops on the RTA, and then out for a breakfast of Mickey Mouse-shaped pancakes and bacon. We’ve taken lots of pictures and let the boys ham it up for the video camera. Mark and I spend a lot of our time watching them both run and jump and play, shaking our heads because it is just so unbelievable. He is so fine. Today he is so fine.
But things will change pretty quickly. We’re still waiting for the experts to report back with their suggested plans. I imagine we’ll sit down with Jeff on Thursday or Friday and lay it all out. There’s a possibility we might go to St. Jude’s in Nashville, whether for the initial surgery or for all of treatment remains to be seen. Jeff will help us sift through all the recommendations to decide if that’s necessary. As he said on Friday, there’s no competition between Rainbow and St. Jude’s (“This isn’t the Cleveland Clinic we’re talking about”) and Austin will simply go where he will get the best treatment. We really hope it doesn’t come to that though — talk about making the already-hardest thing that much harder. Without our families and friends around us, without our own house and own beds to come home to, without the familiar faces we’ve come to trust and love at the hospital. And I can’t begin to imagine how hard it would be for Braedan to have his life so flipped upside-down, as if a sibling with cancer isn’t disruptive enough. He loves his school and loves his friends, and needs every little bit of normalcy we can muster. But we’ll do what we have to.
We told him. Braedan, that is. On Saturday afternoon, while Austin was napping and I was afraid to wait any longer because I’d been walking out of the room in tears too many times already. So we sat him down on the couch between us and I started to cry and we just said, “We want you to know that Austin’s cancer has come back.” He looked at Mark and looked back at me and then Braedan, my boy with a vocabulary that puts college students to shame, who can hold a fully adult conversation with just about anybody, took a deep breath and said, “Poopy.” Mark and I laughed and wiped away our tears, “Yeah, that’s what we think too. This is definitely poopy.”
We talked about how it was okay to feel sad and scared and even mad, either at us for having to take care of Austin so much or at Austin himself for getting so much attention or just mad at nothing and everything all at once. He sat up straight and shook his head vigorously, “Nope, I’m fine. Not sad. Nope. Not scared.” My eyes met Mark’s as we were both wondering if we should push, “Hey, do you have any idea how bad this is?” but decided instead to let him protect himself in whatever way he needs to. Right now, the cancer isn’t visible and isn’t conceivable, even to us sometimes, but as we move forward and Austin’s sickness becomes painfully obvious, there will be plenty of opportunities for us to keep talking to him, for him to finally let us know how sad and scared and mad he is.
In the meantime, he told Austin! I had just warned Mark about it, and he said, “Oh Braedan’s not gonna tell him that quickly.” Well, within thirty minutes of waking up from his nap, Austin hears, “Guess what? You got your cancer back!” Oh boy. I talked to him about it then but he really doesn’t understand. He was on the swingset, I was pushing him “higher, mommy!” and he was excitedly awaiting the arrival of his favorite babysitter. So “cancer” doesn’t mean much right now. Good for him.
Mark and I are okay. We have had some truly horrible moments and some truly happy ones. I have vascillated between depths of despair and bits of pure optimism. I spent the first two days completely defeated, like we’d the lost the battle before it had even begun. My mind insisted on returning over and over again to the worst possible outcome, I envisioned scenarios that I cannot put to words for fear that might make them real. But it’s changing, I’m changing. I can feel my strength gathering, toughness and single-mindedness swirling around inside me. I am preparing. We will do this. I will be ready.
I think I must be rising. I am rising.