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Biking, walking, . . . how about mountain climbing?
The Climb for 5 team raising money for St. Baldrick’s has begun their journey up Europe’s highest peak, Mt. Elbrus in Russia. Today they’re climbing in honor of Emily, another of the five Ambassador Kids, complete with her favorite teddy bear and pink Mickey Mouse ears (atop one of the climbers’ heads). I’m not sure which day they’re dedicating to Austin but when they do, they’ll have his wishing star to guide them:
One side has Wishes for Austin and the other Wishes for the World, each with the same five wishes: Health, Joy, Love, Hope and Peace. I hope it isn’t too cumbersome for the climbers to carry in their packs (a malleable, unbreakable teddy bear is easier to stuff into small compartments) and that it doesn’t get too destroyed by the inevitable elements. But I guess if you truly have those five things, you really can’t complain about anything else, right?
We were doing some repairs to the ceiling in Austin’s closet last week and so removed all of its contents to his bedroom floor (boy, that was scary). Along with a silly array of clothes, shoes, blankets, puzzles and too small snowpants came his bag of wishing stars. It had been tucked away on the back of a shelf since his last overnight stay at the hospital, more than a year and a half ago.
I always brought it along with us, even if we were scheduled for just a single night. I usually only put a few of our favorite stars up, just enough to decorate the room a bit and give me that necessary feeling of security, as if those stars were watching over my little one as he lay in that bed. The longer we stayed or the more major a procedure he was getting, the more stars went up. In those dreadful days and weeks leading up to Christmas 2009, his room looked like this:
But we got lazier as our visits went on and on (and on), and I would try to get by with hanging only ten stars at a time. Austin was no fan of this and once scolded me, “This room looks ugly! We need more stars!” He certainly made sure we never left the house for a hospital visit without that overflowing paper bag full of wishes.
I’ve thought on and off about what I should do with them now to ensure that they last. The stars from his first round of cancer were long ago inserted into a photo album for posterity. But those were all made by me, transcribing the wishes of others, so they were much flatter and simpler than the spectacular, glittery, bedazzled stars made by all of you.
I suppose I should at least photograph each individual star before they get too wrinkled and crumpled in that bag.
But anyway, that bag. The kids must have gone through at least a few of them because there were some on top that were not part of our regular rotation, some I haven’t seen in a good long while. Including one from my father that said, “I wish that Austin and I will go skiing together next winter.” I remember at the time thinking, “Oh that’s sweet … but not gonna happen.” Not the very next winter at least.
But it did happen. My dad wrote that wish in December 2009 and by the following winter, March 2011, just fifteen months later, they went skiing together down the mountains of Park City, Utah. (It wasn’t a very successful skiing adventure, that day, but that’s a story for another time.) But the remarkable fact is that they did it. They skied. Together. The very next winter.
The wish came true.
And I started wondering: How many more of those wishes have already come true? How many of us — friends and family and strangers — wished for my little boy and how many of those wishes have actually happened?
And the answer is a lot of them. All the simple little ones like laughter and giggles, cartwheels and playdates, going to school and making friends and riding a bike. He’s done all those things. He does them every day. He’s had that sleepover in the tent (well, he didn’t last the whole night, but still …), he’s gone sledding down Coventry Hill and boating on Lake Chautauqua. He’s met his little cousins and visited with friends far and near. And the biggest wishes have come true too. He is here, after all. He is with us, and so is his kidney, chugging along.
He’s checking’em off, one by one. His own joy-filled bucket list. That he has many many years to complete.
Well, I think we’ve finally dug out from under the pile of wrapping paper and boxes and excessive toy packaging (how ridiculous are those tie tabs that hold toys to their boxes?). Christmas was another major success for the Gallagher boys. Somehow my attempts at simplicity always fail (much to their relief and delight).
Santa brought new bicycles, Braedan’s outfitted with a speedometer.
Austin’s is small enough he’s able to maneuver it around the house, so he’s been pedaling away, lap after lap through the kitchen and living room. I’m not quite sure his choice of attire is what Santa had in mind though:
Braedan has to take his outside (clothed), which he somehow convinced me to do on Christmas morning when we rode through the snow to my parents’ house. Not great cycling weather but we managed (and even went “12.6 miles per hour!” — I had to keep reminding him to look up every once in a while).
Christmas Eve was lovely, as always, although it is rather difficult to snap a good picture of five sweet grandchildren ranging in age from 9 months to 7 years. We certainly tried though (these are the very best out of at least thirty):
Braedan celebrated his birthday (again), with cake and candles and a few more presents (just what he needed!):
Mark and I got them some fun accessories for the treehouse — a periscope and steering wheel and this cool extension thing for the tube slide so when you come down it in the summertime you land in water. I painted wooden wishing stars to hang inside from the peaked ceiling (I was considerably more excited about them opening these than they were):
Braedan had purchased gifts for the rest of us at the holiday shop set up in his school cafeteria and I’ve never seen him so excited about giving. He carefully wrapped each item, complete with tags and bows, and as they were waiting (im)patiently at the top of the stairs on Christmas morning, he announced that he wanted us to open our gifts first. For Austin, a little red racecar and a light-up key chain (you know, for all his keys), Mark got the obligatory #1 Dad pen and a tool set, and yours truly received “diamond” hoop earrings and a little gold butterfly ring. Which, yes, I wore all that day and several times since. It was all very sweet.
So, all in all, I’d say all our Christmas wishes have come true.
Yesterday, Make-A-Wish hosted a small gathering to “reveal” the treehouse. It was such a neat day for the boys, starting with the delivery of one hundred helium balloons, which Mark placed on the top dormer of the house.
Then the arrival of family and friends to celebrate alongside us. I so wish I could have invited all of you, but I think when it’s finally painted and we’ve put all the finishing touches on the inside, we’ll have a little Open (Tree)House of our own and you can all come marvel at this spectacular piece of construction.
One of the builders came too, with his wife and three little girls. I wish there was something I could do besides say “Thank you” over and over, but there doesn’t seem to be. Each day as the guys were out working, I’d offer coffee or water or lunch but no, nobody would accept anything. I suppose if there’s no way to pay them back then we just have to pay it forward.
All in all, it was a really special day for all of us. Tonight, as the kids were waiting to go trick-or-treating, Mark asked them what their favorite holiday was. Braedan said he likes all of them: “I love candy so I love Halloween. And I love eating turkey and pudding [I really don't know where he got that pudding thing] so I love Thanksgiving. But I love getting presents plus it’s my birthday, so I love Christmas.” And I said, “Yeah and hunting for eggs is fun so we like Easter. And fireworks are fun so we like 4th of July.” And then he said, “Yeah and wishes-come-true are fun so we like yesterday.”
Yeah, wishes-come-true. In more ways than they will ever understand.
For months, and now years, we have all sent our wishes to Austin, written on paper, on keyboards and in our hearts. We’ve wished for broad ideas like strength and happiness, health and peace. We’ve wished he’ll reach regular childhood milestones like going to kindergarten and learning to ride a bike. We’ve wished for health-related miracles like “no more cancer” and kidneys that keep filtering. We’ve wished well into the future for finding true love and fishing with his grandchildren.
But until now, we’ve never asked Austin for his own wish. And he has one. It’s not huge, just a typical kid’s wish, one he told me completely unprovoked one day last December as he lay in his hospital bed recovering from surgery: “Mommy, I want to build a treehouse in our new backyard.”
Well, okay, I thought, if ever a child was going to get a treehouse, it would be this one. So a few months ago when we got our Make-A-Wish packet in the mail, I immediately thought of Austin and his dream treehouse.
We hadn’t been eligible for Make-A-Wish his first time through cancer because he was too young. You have to be at least two to ensure that it is indeed the child’s wish that is being fulfilled. (As opposed to, say, a parent like me who might — just might — say something like, “Oh yeah, Austin? He’s always wished to have a playdate with Shiloh Jolie-Pitt. Uh huh, always, lifelong dream. And he really wants to have that playdate at her house, you know, the villa in the South of France? Oh, and he insists that Mommy come along with him so she can hang out with Shiloh’s parents and sip some French wine on the lawn of said villa.”)
Joking aside, we’ve also been uncertain about whether or not we would take advantage of Make-A-Wish at all, seeing as we can afford to build a treehouse ourselves. But Austin’s doctor and especially his nurses convinced us that this is not for poor children but for sick children, and that they will make it into a memorable experience beyond just producing a thing, and that Austin deserves fulfillment of his wish as much as anyone.
So we sent back our papers and met with our Wish coordinators on Monday. They came over with gifts for both boys (of course) so we could fill out paperwork and flesh out some of the details of Austin’s imagined treehouse. Well, you know once they got the boys started on what it should have, they went wild: swings and slides and fire poles and telescopes and Braedan even suggested that it have a really high ceiling so we could fit a trampoline inside it (somehow I don’t think that one’s gonna make the final cut). Then they asked what it should look like and they started out simple — Austin likes red — but suddenly moved into interesting shapes like maybe it should be a t-rex or a pirate ship or a rocket ship or even an airplane that crashed and got stuck in a tree!
We’ll see what the team of volunteers comes up with but so far the boys are thrilled with the very idea of it, and Make-A-Wish has already achieved its purpose of making them feel special and happy, and giving them something to be excited about outside of hospitals and doctors and sickness. Which is, after all, what we all wish for them.
Finally, some answers to the question I’ve heard literally hundreds of times over the past few days: What can I do to help?
First, the practical stuff: We will need dinner tomorrow (Thursday) and next week (Monday through Saturday). If you’re interested (and have time), please email my friend Julie Rink Mokotoff at firstname.lastname@example.org with your contact info and any day you’re not available, so she can create a schedule. There are bound to be more offers than days, so she’ll do her best to work you all in now or later, depending on our needs as the weeks (and perhaps — but hopefully not — months and years) go by. She will reply to you with your assigned day and directions on how to deliver. These need not be big or fancy meals; just enough for me and Mark (as Austin, if he’s able to eat at all, will be on a restricted diet, and Braedan will likely eat elsewhere) and we won’t often be in our house at the same time, so dinners should be something we can split up and heat or reheat depending on when we actually have a moment for mundane things like food. I’m allergic to shellfish (and have a strong dislike of mushrooms) but other than that, anything is fair game. And don’t worry about dessert — I do not intend to take those “fattening up” posts literally!
Next, playdates: Breadan will need to be picked up from school some days next week. My parents are in town and have a pretty open schedule but, since he’ll already be sleeping there, it seems more fun for him to get to go to a friend’s house. I’ve had many offers over the years from people willing to host him, but, without offending anyone, we do want him to be as comfortable and familiar as possible, so will try to accept only those offers from his already established buddies. He finishes school at 3:05 on all days but Tuesday, when dismissal is at 2:05. His teacher has said he is welcome to stay with her in the classroom for an extra twenty minutes or so if your own child’s pick-up creates a conflict. Please email Lisa Welsh at email@example.com with your availability and she will assign days and provide you with directions to Fairfax School. Again, we will try to work people in as time goes on.
And now for the less practical but just as important stuff: Back in October 2007, I decorated Austin’s hospital room with “wishing stars” which dangled from the ceiling and contained individual wishes sent from friends (and strangers) near and far. Some were funny, some heart-warming, all sincere. And he loved them. We used to lay together in his hospital bed and he would reach up to his stars as they twirled and spun above us through those long and sleepless nights.
Given that wishing stars seem particularly appropriate at this time of year, I will once again be hanging them, both from the ceiling and on the artificial tree we’ll bring with us next week. I am happy to transcribe people’s wishes if they want to send them along electronically, but I also welcome homemade stars (the more glittery and colorful, the better) from as many of you as possible. Drop the off at our house or with Braedan at school, and if you are a pre-school family, leave them with Lola Chicotel (in Mrs. B’s morning class) for her parents Christie and Dom to deliver to us.
The wish I will write on my own star is one I hold tight in my heart for both my children. It may seem simple at first, but it requires the attainment of many many milestones along the way. And that is that both my boys get the chance to be happy grandfathers.
If that wish comes true, then we really will be the luckiest.
We’re fattening up again. Packing in as much Christmas as we possibly can before . . . well, before who knows what, but, at they very least, before tomorrow.
Friday afternoon, we went to visit Santa, arriving at five minutes after 5 o’clock only to discover that Santa “feeds his reindeer” between 5 and 6 (I swear, we did the same thing a few years ago). So I dragged my two boys around the mall for an hour, not an activity they’re accustomed to, bought them dinner in the food court (another activity they’re not accustomed to) and managed to check a few (painfully few) gifts off my list. Finally Santa returned and we were the first in line. Braedan marched right up and started peppering the old man with questions. “Where are your reindeer?” he asked. The poor guy looked confused and said, “My reindeer? Oh, my reindeer are in the North Pole.”
“Or . . . maybe up on the mall roof where you were just feeding them,” I said, nodding vigorously, like, “Come on, guy, get with the program.”
Austin refused to sit with him (for the second year in a row) but passed along his wishes through Braedan, who had no trouble conveying all both boys hoped to find under the tree on Christmas morning. I had to remind him on the way home that such things were suggestions only, mere ideas from which Santa could pick and choose (as in, “Yes you might get the toy leaf blower, but no, you might not get a ride-on motorcycle”).
That night, Braedan put his multi-cultural education to good use as we made a Menorah out of Play-doh and birthday candles. We’ve lit it every night, much to Austin’s delight, who shouts “I love Hanukah!”
Yesterday afternoon, we went on a “train ride” which is really just a trip on the suburban transit system, which doesn’t even go underground, for all of about four miles. But, man, did they love it. You’d think they were on the TGV or something. Braedan kept asking how fast it was going, hoping I would say something in the 200-miles-an-hour range.
We took it as far as Shaker Square where we ate breakfast for dinner and looked at the light display. Mark drove separately (racing alongside the train on the way) so we were able to drive home in a warm car instead of taking the return train, the luster of which is lost after waiting in thirty degree weather for twenty minutes.
Then this afternoon, we chopped down a pine tree in the backyard of our new house to use as our Christmas tree. There’s a clump of trees right smack in the middle of the yard that I want to take down since they render useless my new kitchen window designed to view the kids as they play on the swingset. Austin insisted on wearing his helmet (you know, ever cognizant of wayward limbs falling on his head). We haven’t actually brought the tree home yet and aren’t even sure it will fit but it was fun to watch Mark saw it down.
And now, the boys are sleeping, all fattened up. We’re ready for tomorrow, strangely calm, whatever comes will come. The ultrasound is at 9, so Mark (who had saved up some vacation days we thought he’d use for the move) will bring him there and I’ll join them after dropping Braedan at school. We should be home after a few hours, although it’s unclear what information we’ll have at that time. Jeff is at a conference and won’t be back in the hospital until Tuesday morning, but we expect the radiologist to give us some unconfirmed findings tomorrow.
We are hopeful, of course, but also realistic. We know what this thing most likely is and we know what will most likely happen as a result. But hey, stranger things have happened (most of them to Austin) so we aren’t giving up hope until we absolutely have to.
I sent a message to Austin’s teachers today letting them know he wouldn’t be at school tomorrow and received a reply that said that his classmates would “wish him well” at 9:15. This is common practice at his school: whenever someone is absent, they are wished well during morning circle time. “We wish Austin well, we wish Austin well,” the little three-year-olds will chant in singsong voices.
So tomorrow, right around 9, let’s all wish Austin well. Maybe that’s all it’ll take.
And so, another year goes by.
Today was Austin’s third birthday. Of course, we can’t make it through this day without reflecting back over his birthdays past and how very far we’ve come in three short years. We celebrated his first birthday while home on furlough, five days “off” sandwiched between 14-day and 15-day hospital stays. That was the year when everything was still so uncertain; we were still in the thick of cancer, with no sense of what the next minute or day or year could bring. So on that day, Friday September 21, 2007, we had everyone wish for him at the exact moment of his birth. And at 11:48am, all over the country and maybe the world, friends and strangers were blowing out candles and sending wishes off into the universe, carrying hopes of birthdays to come on their wings.
Then last year, when he turned two, everything seemed normal, extraordinarily ordinary. We threw a small party in the yard with family and friends and as he blew out those candles, I thought he would last forever. I imagined him growing up, going to school, riding a bike, learning to read, having a girlfriend, graduating from high school, going off to college, getting a job, getting married, becoming a father. I believed all of those things would happen, surely with some bumps, maybe not in the perfect order. But I really believed they would happen.
And then came March. And another tumor.
And suddenly, I felt like a fool. Like an ass. Like how could I have let myself be so naive, so hopeful, so trusting. How could I have so thoroughly believed the worst was behind us when the worst seemed just about to begin? In those weeks, I wasn’t sure he’d make it to 3, let alone 30.
But today came. And, because life is once again back to normal, it was all about dinosaurs. He had a party at the park yesterday complete with a mom-made 3-dimensional triceratops cake. Now before you go thinking I’m Robo-Mom (as Mark called me with affection late Saturday night as I pieced together this chocolate and lemon monstrosity), this cake was far from perfect. In fact, by the time the party began, the head had come loose from the body, the horns were toppling and we were all joking about dinosaurs becoming extinct. But Austin was beaming with pride as he announced, “Dat a cool cake, Mom.”
So I’m back in that place yet again, that place of believing so thoroughly in all he will do, see, be in his life. Of knowing he will go to kindergarten and learn to read, he’ll ride a bike and play (non-contact) sports, he’ll kiss a girl (or boy . . . whatever) and drive a car. There will be setbacks and maybe worse than setbacks. But we’ll make it. He’ll make it. Just look at him . . . .