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People always comment on how lousy it is that Braedan’s birthday is Christmas Eve. And granted, it’s not ideal. He has a major crush of celebrations and presents all at once, with nothing to balance it out across the year. It all feels rushed and squeezed in amidst the many many other festivities.
But he loves it and is keenly aware of the reaction he gets from people when they ask him his birthday. He never ever answers “Christmas Eve,” but instead says December 24 and waits for them to go, “Ooohh, wow.”
He is always guaranteed to have large family gatherings take place on his actual birthday every single year. This is great now, at age eight, but I’m sure ten years from now he’d much rather be hanging out with his friends. And good luck finding an open bar on his 21st birthday!
But I am definitely of the mindset that it is better to have a birthday right before a major holiday than right after. I mean, think about today. If you’re anything like me, you were tired and wanted to stay in your pj’s, stuffed from days of overindulging and intent only on separating out the reusable wrapping paper from that bound for the recycling bin. We did a puzzle and played a few rounds of Austin’s new Hungry Hippo and Numbers Zingo. We searched high and low for the right batteries for every new electronic toy. We tried on clothes and made piles of things to keep and things to return. But we certainly were in no mood for parties or cake or guests.
So we’ll take our December 24 child. Not that we have any choice, of course . . . .
We have been buried in the flurry of holiday activities lately. Shopping and wrapping, addressing and mailing, baking and baking and eating and eating. The boys and I baked a holiday breakfast of muffins and breads and fruits to deliver to the Oncology Floor recently. (There was no blizzard-induced walk home after this one, thank goodness.)
That same day, we were entertained by 120 first and second graders singing their hearts out in their production of “Flakes,” a very sweet song and dance concert in which each second grader recited an individual line. Below is the one and only Braedan, whose pretty face is hidden by his snowflake cap. His part came in the middle of a story line about how each snowfake is different, even though, at first glance, they all look alike. The other kids had lines like, “Some are very short and some are very tall, Some have lots of hair, others none at all.” But no line was so perfectly suited to its child actor than Braedan’s:
(Having a little trouble with the technology here — will fix on Monday.)
In case you weren’t able to understand him (even though he was the most understandable of the bunch!), he said, “Some of them are singers, others like to dance. Some would play golf every day if their spouse gave them the chance.” What you don’t get in this video from the afternoon show is the appreciative laughter of the parents at the evening show.
Thursday, we celebrated his birthday at school with mitten cookies, a reading of The Mitten Tree (a truly lovely children’s book if you need a new one) and some mitten measurement. Friday, the parents hosted a second grade brunch in place of a traditional class party since there were two assemblies in the afternoon. We made a zillion pancakes and waffles, with the help of a lot of extension cords, and were thankful that no one brought unasked for candy and cookies.
And today, my Braedan is eight and the real whirlwind of the holidays is upon us.
So, we’re busy and more busy and busier yet. But we do take the time to appreciate what we’re not doing this holiday season: We’re not juggling visits with family around visits to the hospital. We’re not choosing presents that are only appropriate for use in a hospital bed. We’re not frantically canceling family vacations. We’re not dazed and exhausted and wondering how on earth we’ll manage to play this damn cancer game any longer.
We are not sad and afraid and worried. We are not sick.
We are, instead, this:
Happy Everything from all of us to each of you.
I’m not sure whether this qualifies as an early Christmas present to ourselves or a late Labor Day/Halloween/Thanksgiving present, but . . . our master bathroom is finally (finally!) finished and usable.
The most recent delay (of about six weeks) was entirely of our own doing. We had agreed early on to do all the painting ourselves to save some money. Well, because it’s a bathroom and because it’s all cabinetry requiring oil based paint, it took a really, reeaaaalllly lllloooonnnnggg time. (Thank you, Mark, for all your after-hours work.)
But I am thrilled with the finished product and, as I was enjoying my first soak in the tub last night, I knew that it was definitely worth the wait:
The boys got a trial run in the deep-soaking tub with jets tonight but their raucous splashing has earned them a three-month ban. Awesome, more for me. Oops, that’s not very Christmas-y of me, is it? Oh well, it was supposed to be a Labor Day present . . . .
Perhaps some of you have seen the national “Deck the House” contest being hosted by Patch.com? They are asking for uploaded photos or videos of houses with great holiday displays, which will then be voted on by each of the 860 Patch communities across the country. A team of judges will then choose the top 24, which will then be open for nationwide voting. The local public school district of the final winning house will receive $100,000.
So, a friend suggested that our across-the-street neighbors enter their house in the contest. I brought it up to them, thinking they would politey decline, but they were all for it, pending approval by some neighbors over fears of increased car traffic. You see, every year this guy creates this intricate forest of lighted trees that “dance” to Christmas music. Really. There’s a little sign in the yard telling you what station to listen to in your car (or living room if you’re us!) and the lights on the trees flash on and off in rythym to the music. It’s a pretty incredible technological feat.
There’s a 3-minute video up on the Patch site now. Take the time to watch it; it’s pretty cool. My boys and I love the end when it looks like there’s just one tree racing around and around the yard. And then, of course, take the time to vote for it as your favorite (it’s the only entry in our district as of now). You can vote once each day between now and December 26. (And then, if it makes it to the Round of 24, you can start voting again between December 30 and January 8, but don’t worry, I’ll be here to remind you!) And, most especially, take the time to share it with all your networks far and wide.
Let’s go viral!
It’s that time of year again, folks. Friday is the Rainbow Radiothon on WDOK 102.1 benefiting the child life department at the hospital. It looks like they’re going back to the old format of using the stories set to music. This was how they did it for many years and it was enormously successful (because, as anyone with any fundraising experience knows, making people cry is the best way to get them to open their wallets). Then for the past two years, they used parent interviews with no song attached. We participated in one of those as well and had our story used in 2010, but, honestly, it was pretty boring.
Now we’re back to our recording from many many years ago, long before the idea of relapse had entered our minds or our lives. Ordinary Miracle by Sarah McLachlan, as heard here, could not have been a more perfect match for us.
It’s sort of funny to hear the story now, with our confidence on full display (“Austin’s story ended happily…blah blah blah”). We clearly had no idea of all that lay ahead. Plus they cut and paste so many parts of the interview together that events that happened six days apart sound like they were mere hours later in the same day.
But it is truly beautiful and spot-on in its message. I can only offer my advance apologies to the preschool moms with mascara issues.
So, here it is: my sweet boy with that two-year old face covered in Fudgsicle.
“It seems so exceptional . . . that things just work out after all. . .” Exceptional indeed. We are living an ordinary miracle every day.
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.