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Whatever you celebrate, wherever you are . . . be a light in the darkness.
From a recent post I wrote for St. Baldrick’s:
Lighting the Darkness
By Krissy Dietrich Gallagher, mother to Austin, 2012 Ambassador Kid
My grandfather died on December 21, 1982. The shortest – and darkest — day of the year. Cancer, of course. My brothers and I drove with our dad from Cleveland to Massachusetts for the funeral, where my mom had been for the previous week. It was the first time we’d ever not spent Christmas tin our own home, where my grandparents usually came to stay with us. After the funeral service on Christmas Eve, my grandmother went to lie down and my brothers and I ended up in her basement, one of our favorite places in her house (we’d spent many vacations roller skating around and around on that smooth concrete floor). But this time we searched through her neatly stacked boxes until we found some labeled “Christmas.” We quietly lugged everything upstairs and by the time my grandmother awoke from her nap, we had decorated a small fake tree in the living room and hung stockings over the fireplace. Just because our Grampy was gone didn’t mean we had to give up Christmas.
She talked about that day until she died, a physically broken but emotionally whole old lady, more than twenty years later.
To me, the holidays are about finding the light in the darkness. Placing candles in the window to light the way for those outside on these short winter days. Bringing the evergreen tree inside when all else is bare, to remind ourselves that life is still out there, that spring will eventually come.
When your child has cancer, the light and the dark, the circle and the cycle of life, feel ever more important. Everything is suddenly meaningful; little things like eating dinner as a family and big things like spending Christmas at home. When my Austin relapsed at age 3 in December 2009, the dark days were upon us in more ways than one.
Relapse is scary. Scarier than the first time, for us, at least. It means that that whole army you employed, the full-on assault you launched on your child’s small body, simply wasn’t enough. It means that cancer was stronger than the strongest medicines. And that is terrifying.
But you do it again. You load a fake Christmas tree into the car and you decorate every inch of that hospital room with anything sparkly and shiny you can find. You light the darkness because there is simply no other way. You hold on to hope and you force yourself to remember that spring will come.
Even on the darkest days.
We actually went home that year, a few days before Christmas, and returned to the hospital for chemo and radiation shortly after. But we spent Christmas Eve surrounded by family and friends and we celebrated all that we had, with full hearts. We awoke in our own home, a family of four, to open presents in front of the fireplace, to snuggle and laugh and take lots and lots of pictures. Never far from our minds was the thought, that fear that is impossible for the parents of the sick to shake, that this might be the last Christmas we would spend together.
And now, here we are, three years later, a family of four, alive, intact, together. Two little boys quickly morphing into big boys. Healthy and happy and pretty darn close to normal. Lighting the darkness is their own special ways each and every day.
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.
The transition from Thanksgiving to Christmas seems to get shorter and quicker every year. So now that we’ve all moved on to the next big thing, it’s time to think about giving. Every year, I encourage my kids, with limited success, to weed out their toys to make room for the inevitable mass of new ones. And this year, we have lots of good options for what to do with all their extra stuff.
First (and this one is just brilliant), The Smead Discovery Center at the Natural History Museum is accepting broken plastic toys — yes, that’s right, all those tiny broken pieces that have no home or game parts with no game, the junk that clutters up the bottom of toy baskets and drawers in every room in the house. They’ll take it all, more than just the action figure parts they accepted in the past, as long as it’s smaller than 12 by 6 by 6 inches. They then send them to the Toy Lab in Cincinnati where kids make them into new toys in an arts and science lab (how cool is that?). But they’re only accepting donations through November 30, so get busy.
Next, two lovely organizations with which I’m affiliated are having toy sales next week. Both Family Connections, where I sit on the board, and St Paul’s Coop, where Austin attends preschool, will be collecting new and gently used toys and baby gear over the next week. Check out their respective websites for all the necessary details: Family Connections and St. Paul’s.
And finally, the one I am most excited about: Go Public! Great Schools Are Everybody’s Business, which is a grassroots movement to foster stronger ties between Cleveland Heights-University Heights community and the public schools, is having a learning material toy drive. The motivating idea behind this is that children can’t learn if they don’t know how to play and they can’t play if they don’t have the right toys. As I’ve mentioned, a significant percentage of the students in CHUH schools live in poverty and I’m certain that few of them have appropriately educational toys in their homes. I’m not talking just about flashcards here, but books and puzzles, legos and building blocks, art supplies and board games, anything that requires imagination or creativity.
The counselors at each of our seven elementary schools will identify the 10 to 20 neediest families in each school, who will then receive a box of gently used and/or new toys to take home before the holiday break. If you have anything to share, please consider this opportunity as it has an immediate positive impact on the identified students and their entire families. For those of you who think your materials would be too young for elementary students, everything will be sorted into age categories, including pre-K and K, which will be hugely beneficial for the younger siblings in our students’ homes.
There will be collection boxes at all seven elementary schools and Coventry from Monday December 5 through Friday, December 16. I spent hours and hours today going through all the various baskets and containers that store toys (and bits of broken plastic) in our mudroom, living room, both boys’ rooms, and the third floor playroom. I weeded, sorted, repaired, repackaged and boxed up a storm.
It was much-needed and very satisfying and, most importantly, can truly make a difference to a child in need.
I had an opportunity over the weekend to give a speech on behalf of Jeremy Cares, an organization that provides gifts to families who are in-patient over the holidays — like theirs once was and like ours almost was.
My talk can be viewed here. It’s fairly long and a bit fuzzy at times, but I think you’ll enjoy it. I got a lot of positive feedback afterward and even a standing ovation when I announced just how fine Austin is now. I do wish I had pulled my hair back though since it keeps getting in my way and I also should have put down the five sheets of “speech” I’d brought with me, only to end up speaking from memory since there was no podium. But now that I’ve pointed out all the flaws, take a look. (The video is located on Facebook right now, so let me know if you’ve yet to venture into that world and are unable to see it.) Note: Now it’s a few hours later and I was told by many that the video was “unavailable” so try the link above, it should now take you to another site and you should be able to view it.
Here also is the clip of Jeremy George’s family last week on Good Company, our local morning show, describing how their organization came to be.
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.
We’ve had a very busy few weeks leading up to this day. Starting with Braedan’s holiday concert. Here he is with two of his buddies after the show:
And during the grand performance:
And Austin discovering the reverse camera option on my phone (during said grand performance):
Then there was the visit with Santa Claus with their cousins:
And the carefully written letters providing evidence of “goodness”:
Then we celebrated Braedan’s birthday at school, with homemade “B” brownies:
Following that, there was the obligatory kid party at Great Lakes Science Center (and fabulous cake made by our old Edgehill neighbors):
This past Monday, my little elves and I drove a full carload of goodies down to Providence House, everything from hand-knitted blankets (thanks Cori) to toys and games (thanks Judi) to boxes and boxes of baby food and diapers and paper towels and bleach (thanks Braedan and Austin).
And now here we are, on this most special day when my sweet Braedan turns seven (we did spend one Christmas in the hospital, after all!). As he ate lunch today, having just noted the minute of his birth (12:46pm), he sighed and said, “Wow, look, we all made it another year.”
Happiest of holidays to you and yours.
My boys have a bad case of the gimmes. And the early arrival of the holiday season is only making it worse. Breadan has already circled every single toy in the Target and Toys R Us catalogs, with the exception of princess and Barbie gear. He then stapled together seven sheets of paper to create a scroll for recording how much money all his gifts would cost, carefully adding it all together, remote control car by remote control car. He’s smart enough to round up (no $0.99 for this kid) and counted by tens to a whooping grand total of $1,940.00!
Okay, I thought. This is fine for a math lesson. But not so much for a life lesson.
So Mark and I have been trying to figure out to how help them see outside themselves and their ever-growing list of wants, wants, wants. Especially considering that last year, they were the recipients of another family’s kindness and generosity. My, how quickly we forget.
I did a little online searching and found a few good options that will allow them to actively participate in giving: One is at Bellefaire, where they have Wish Lists — 2,300 of them in fact! — written by the children and teens they serve. Each list contains only two items, one “need” like cold weather gear and one “want.” This in and of itself is eye-opening for boys like mine who wouldn’t think of gloves or boots as a worthy Christmas present. Maybe something you get, sure, but not something you actually ask for. So we’re going over on Wednesday to sift through the lists until we find some written by boys aged 4 and 7 and then it’s off to Target.
Then there is Providence House, which is a “crisis nursery” (that name sort of says it all, doesn’t it?). Their holiday wish list was sad to even read because it had such basic needs on it: diapers and wipes, toilet paper and laundry detergent, canned veggies and baby formula. We talked about it tonight at dinner and the boys were amazed that someone could lack such basic items. Braedan wanted to make sure that the kids still got gifts from Santa, which I answered in a roundabout way — “Well, yes, because they’re still good children, they haven’t been naughty, but usually only one gift.” (I didn’t want to ruin the magic of Santa but also didn’t want to let him take the responsibility of these children off anyone else’s hands.) Austin immediately suggested we count out the money in our change jar so we could go to the grocery store and start filling boxes. We spent the next hour on the dining room floor, stacking out coins, Braedan carefully counting the nickels and quarters while I tackled the dimes and pennies, and discovered we had an impressive $77 (not including the $5 worth of quarters we set aside so Mark can park near the courthouse). That, coupled with the change in Braedan’s “give” jar and whatever else they find over the next two weeks ought to make for a lot of canned veggies.
I figure if we can turn even just a little of their get-get-getting into give-give-giving — and actually make it exciting and enjoyable — then we’ve done a pretty good job.
Boy, I thought we had a lot of toys last week . . . These kids have made out like bandits. And they are thoroughly enjoying it. A little proof for you:
The above stash came from the family of a cancer survivor who provides presents to those kids who are in-patient at Christmas. We obviously weren’t but our children sure benefitted from the fact that we almost were!
Christmas Eve at the Eyres’. We tried desperately to get one single photo where every one was looking at the camera, smiling . . . and not picking their nose! No luck.
New mittens all around.
On our way to both our Christmas Eve and Christmas evening events, Austin fell asleep for overdue and much-needed naps. So we arrived with him snoozing in our arms and everybody tiptoed around and said, “Oh, is he feeling so awful? Is he lethargic? Does he wish he could get up and play with the other kids?” And Mark and I were like, “No, this is just an afternoon nap! A regular kid sleeping soon to be a regular kid playing.”
And that regular kid playing he became. At Mark’s parents’ last night, he raced around being tickled by Grandpa and then designated himself as the pusher of his cousins in the Lazy-Boy-cum-Tilt-a-Whirl chair. Like nothing had ever happened. Like nothing in the world is the matter.
And the results of the kidney function test he had on Wednesday? Normal. The low end of normal but normal nonetheless. Is that just nuts? Normal kidney function. Man, am I glad we didn’t take that thing out. Chemo and radiation are aggressive enough; add dialysis to the mix and you have the ultimate axis of evil.
So, we’re here, enjoying the last of our normal time. We’re getting ready, both practically and psychologically. But mostly, we’ve been just hanging out, opening and assembling a truly obscene amount of toys. We have a lot planned for tomorrow and then it begins. The onslaught. The assault.
I asked Austin the other day if he was sad he had to go back to the hospital and he looked at me like I was crazy. “No,” he said like Duh, mom. I do expect that to change once he learns how he bad he’ll feel in there. But we’ll take his good attitude for now.
And as I was putting Braedan to bed tonight, we were talking about the coming months. (He’s learned to say, right at that moment I’m about to leave his room, “Wait, I want to talk about cancer. Can we please talk about Austin’s cancer?” Not exactly a request I can turn down, that smart smart boy.) I was telling him how hard it would be for all of us because the medicines we’ll give to Austin are going to make him feel so awful. And he said, all matter-of-fact, all big brown eyes, “Well, if the medicine is going to make him feel so yucky and is going to be so awful, but it”ll get rid of his cancer forever, then I vote for the medicine!”
Did I mention he was a smart smart boy?
I’ve been struggling. Focusing in on the absolute worst possible outcome in any given scenario. Certain that Austin would fall victim to every “rare but serious” side effect listed for each of his drugs (things that range from permanent hearing loss to irreversible organ failure to the big D). Wondering how many children I’d be buying Christmas gifts for next year.
But it’s lifting. I am, yet again, rising. Today has been a much better day. Austin is back, full force. He’s playing and eating and laughing and snorting like a pig (his new thing for some unknown reason). His resilience, his ability to get back up after being knocked down and down and down, reminds me to hope.
It started lifting last night. We’d finished dinner and I was standing there paralyzed by the mess in my kitchen and Mark told me to take some time off. “Stop worrying about whether you and I are putting in equal time right now. It doesn’t have to be equal; it has to be about meeting each other’s needs. Right now, you need a break. I don’t. The tables will turn and when they do, I can break down and you will step up.”
So I left. Went to Heinen’s and Target. Studied food labels for potassium and bought a few last minutes stocking stuffers, along with thermometers, hospital slippers and children’s Tylenol. I wandered around the store in a daze, thinking of my incredible husband and my incredible children. Struck by the goodness and kindness in my life and by the misery and cruelty in my life. The two opposite forces converging all at once, toppling over each other, jostling for position. Wondering which would win out, which would prove to be stronger in the end.
I drove home listening to the “holiday music station,” which is a form of torture in and of itself between the longing of “home for Christmas” songs to the new meaning behind “All I Want For Christmas is YOU” (not to mention the thoroughly annoying “The Twelve Pains of Christmas” which makes me want to shake someone: “Oh really? You couldn’t find a parking spot at the mall??”). But as I passed the twinkling lights on the houses, driving slowly with no traffic around, I was calmed. I pulled into the driveway of my full house and walked in my backdoor to the sound of laughter.
My three boys, one big, one medium and one little, were running around playing hide and seek. And laughing.
Just because you have a plan doesn’t mean things will go according to it . . . .
Don’t worry, nothing major except that instead of sitting around my table enjoying this delicious meal with my family, I am sitting in front of the computer quickly eating before packing my gear for one more night.
Today’s surgery to remove the catheter and insert the mediport was an “add-on” and they originally thought we’d go at 11. Then 12. Then 1. Austin was finally taken off to anesthesia at 3:05 and back in our arms by 5:15.
But that’s not why we’re staying. Because Austin is so small, they were unable, despite several attempts by the chief of pediatric surgery, to thread the mediport line through the vein in his neck. Ultimately they made a new incision and ran it lower down on his torso. It makes no real difference to him or us in the long run but they do want to do a repeat x-ray tonight on the neck to make sure there’s no damage and keep us for observation.
But first thing tomorrow, we are outta there.
And then, back on Monday for out-patient radiation and maybe (this part is indeed bad news) maybe back on Tuesday to start chemo. Chemo this time around is in-patient, usually for four days at a time which would mean . . . you guessed it . . . Christmas at the hospital.
That’s not set in stone yet and there are a few things that could postpone the start of chemo until Monday December 28 (none of which has anything to do with anyone feeling sorry for a child spending Christmas in the hospital), so there’s still hope. It doesn’t matter either way; we’ll just manage. That’s what we do.