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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

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.

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:

Merry and bright

Happy Everything from all of us to each of you.

What a difference a year makes.  I find myself struck day after day after day by the power of the memories of last year.  Right before Thanksgiving (last Thanksgiving), Austin had an ultrasound that revealed a new spot. New, as in not the same spot we’d been watching and worrying about all fall. So we knew, at that point, we almost, mostly, practically knew what that his cancer was back. But we weren’t quite ready to commit yet, to actually do anything about it.

So we waited, a few more weeks, for a repeat ultrasound.  And that happened on December 7. One year ago tomorrow. And that, well, you can read it here. It was a Monday and then I sent Austin back to school that Tuesday and Wednesday because I knew these would be his last days there for a good long while.  We spent one quick night in the hospital that Thursday for a CT scan and then returned the following Sunday for the next surgery and big pre-Christmas stay.

But it’s that day of school on the 8th that I remember. I dropped him off in his classroom and walked out as he cried for me, held tight in the arms of his teacher. It wasn’t unusual, he cried when I left on most days last year (and many this year). He ends up happy, within mere minutes, so I knew in my head it would be okay. What I felt in my heart was another matter. That walk out was one of the hardest things I have ever done in my life.

One of my closest friends happened to be parent helping in her daughter’s classroom that morning. And I had stopped to see her for big hugs on my way in, but I didn’t want to stop again so I walked out the door and down the path to my car, and I suddenly just lost it. Another mom came walking up, one I know well who had already read the previous night’s update and I just fell into her arms. She was holding a baby bundled in a snowsuit but managed to hold me too. And I sobbed. And I really wanted her to go back in and get my other friend for me, but I couldn’t bear that one minute when I’d be standing out there alone in the snow, while parents who didn’t yet know wandered past me. So she did the job (thanks, Lisa) and I mumbled over and over into her winter coat, “I don’t know if I can do this again. I don’t want to do this again.”

But, boy, did we do it.

On this weekend last year, we chopped down the top of a pine tree here in our new yard and brought it back to our old house to serve as our Christmas tree.  Well, it turned out to be pretty spindly and lopsided and very Charlie Brown-like:

So we made up for it yesterday by buying two trees. One for the living room, which the boys are calling their own because they finally got their wish to have colored (as opposed to my preferred white) lights. And another for the dining room, where I finally got my wish to have a perfectly color-coordinated tree.

Yup, we definitely did it.

Thanks for all the responses to yesterday’s post.  First and foremost, I am no saint of a mother. Not at all. I’m impatient with my kids and short-tempered and have learned (the hard way) that screaming, “BE NICE!” is not the most effective parenting technique.

But I am quite pleased at the number of people I’ve talked to in the past twenty-four hours who’ve said that they’re now inspired to do something similar this holiday season. I told the boys this afternoon about friends who’ve heard they’re buying gifts for others and now want to do the same. So instead of just bringing Christmas (or Hanukkah) to two children, they’ll be responsible for bringing Christmas (or Hanukkah) to many. They thought that was pretty cool.

Austin is so into collecting money for our Providence House boxes that we used the extra hours of sunshine this afternoon to clean out my car (waaaay overdue), finding another $1.58 in sticky coins. And Braedan is positively wowed by the fact that we might round up an entire hundred dollars. We’re gonna cut coupons as an additional lesson in stretching our money as far as possible to have the biggest impact. Of course, I’m not actually going to bring all our change to the store — no matter how great a lesson that may be, I’m just not willing to do it.

I called Providence House today to see if they would take used shoes or clothes and they said no, only new, which is sort of a bummer but also understandable. She did say they would take books, puzzles and educational toys or games if they appeared new (of which we actually have a few). But mostly, we’ll be buying basics like diapers and baby food. If any of you want to add a few small items to the boxes, you can just drop them off at my house or bring them to me at school or wherever you see me before December 10.  I know it would seem silly to drive all the way down there to deliver a single bottle of laundry detergent, but if we work together we could make quite a significant contribution . . . and quite a significant difference.

Speaking of collecting and delivering small items, I have another amazingly simple idea. When we were in-patient, I was lucky enough to shower at home almost every day. But for most parents, you’re stuck in the hospital, far from home, often having arrived with little warning and little packing and perhaps no toiletries.  The floor staff provides toothbrushes and mini toothpaste, plus soap and baby shampoo, but that’s it. And I, for one, can not wash my hair without conditioner. It’s not about vanity — it would simply get too tangled to pull a comb through (and okay, it’s a little about vanity — you already feel awful, no need to look awful too).

So I spoke with a woman today at the Ronald McDonald Family Room at Rainbow.  This is a volunteer-run space with computers and massage chairs and old magazines where parents can unwind or take a small break from the exhausting work of watching over their sick child. They have free bagels and coffee and an always-full basket of candy to choose from. So I asked the woman if they would keep a basket of sample-sized toiletries for parents to take when necessary. She was thrilled and said they’ve had one in the past but it’s not currently stocked.

Soooooo, if you have any hotel shampoo (and conditioner!), lotions or soaps or even those samples you get when you buy make-up at the department store, bring them to me and I’ll put together a basket for the hospital. It’s such a tiny gesture and seems so minor, trite even, in light of what these parents are dealing with on any given day, but it’s nice to be able to wash your hair and even nicer to indulge for a brief moment.

I hope I can continue to inspire you. As so many of you continue to inspire me. Thanks and giving all around.

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.

 

 

Like every other parent in this Facebook-obsessed world, I feel compelled to share photos of my cute kids on Halloween. First, on Friday Braedan’s school marched in a parade around the block. Braedan had decided early on that he wanted to be a fire fighter, so I thought, “Well, what does a fire fighter need? A fire to fight, of course!” So here are my two boys:

Braedan as fire fighter and Austin as burning house

I got rave reviews for this one as we traipsed
around the neighborhood
.

Austin’s costume was a bit too cumbersome (“boxy”?) for climbing stairs so we ditched it and he was Buzz Lightyear for trick-or-treating.

Visiting the “cemetery” across the street

With their buddies

Homemade extras (wings and badge)

It’s interesting how whatever is happening with Austin’s health makes the holidays take on heightened importance. I feel like we’ve been through so many years now of extra-special Christmas celebrations or Easter hunts or birthday parties, all planned and executed with a lingering fear that each one could be our last.

Last Halloween was an unusual one because on the outside Austin was so apparently healthy, but deep inside (his body and our minds) something wasn’t right. We had already been through a month of back and forth, back and forth, uncertain if the shadow we were watching on his scans was cancer or not. By the time Halloween rolled around, we were determined to make the most of it, a small acknowledgment that the worst might yet lie ahead.

And, of course, the worst did lie ahead. That shadow soon revealed its true self — tumor — and we again found ourselves in the full throes of cancer. But for that holiday weekend last year, and for this one this year, we let ourselves and our children relax. We let them be what they deserve most to be: just kids.

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.

That can’t be a bad job, huh?

Don’t fly away


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.

Even a fire pole

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.

Fox 8 sent a cameraman and I am extremely pleased with the piece they aired on the news last night. Here’s a link to the video and here’s the less exciting news blurb on their website.

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.

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