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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.

You know we’ve become mighty good at seeing the bright side of otherwise dark situations.  It’s a survival mechanism, I suppose. So, we’re now looking forward to a “leaf peeping” trip, sometime in October.  Still trying to find the perfect set of days, in between class pictures and field trips for the kids, a very unpredictable trial for Mark (as in, the jury should be able to decide this one pretty darn quickly, but common sense doesn’t always prevail. . .), doctors’ appointments, board meetings, and so on and so forth.  Combine that with the fact that direct flights from Cleveland to Portland happen maybe once a week (and layovers with kids should be avoided at all costs), and we’re having trouble settling on the exact dates. But we will definitely go on this trip.

We are hoping (silver lining here) that either of our two sets of friends, one in Boston and another in New Hampshire, will be able to visit us during our newly planned getaway. Plus the kids will be more settled in their school routines (and more ready for a break).

Speaking of school, Austin finally started this past week, after a painfully drawn out orientation schedule for pre-schoolers (which I found brilliant Braedan’s first year, but now, in my fifth year as a preschool parent, I’m not so thrilled with). He is doing fabulously, by the way, so much more ready to separate from me this year than he ever was last.  He is becoming more independent and talkative by the day, and is in an extremely happy place.

Braedan, too, is doing better. His complaining about school has quieted to the usual murmur, louder at breakfast when he’s still half-asleep and I’m nagging him to finish his breakfast, put on his shoes, get out the door. His teacher, if not exciting, is really quite nice, something he has begrudgingly admitted. He started tennis lessons at school on Tuesday afternoons, which is helping.

He will also meet with the psychologist at Rainbow next week for a one-on-one session.  Mark and I met with her last week and we feel very fortunate to 1) have someone so readily available to help and 2) to have such a ready-made reason to seek help.  I think most six-and-a-half year olds would benefit from having a grown-up to talk to, to help them learn how to express their emotions in a healthy way, to teach them skills for de-escalating anger or handling disappointment.  In fact, I think most people any age would benefit from that. It’s not like they’re gonna sit around and talk about cancer for an hour; that just happens to give us a great excuse to get in the door.

So, all in all, things are fine. We have the wake tonight and funeral tomorrow; the kids will sleep at Mark’s parents since all the services are on the westside. They’re as happy about that as anything else. And Maine still stands, awaiting our arrival. Silver linings abound.

Oooooooh, things just don’t always work out the way we expect them to. Like we needed more proof of this, right? The father of Mark’s best friend died yesterday afternoon and the funeral is on Saturday. Soooooo, we’re not going.

I’m on hold right now with Continental, trying to re-deposit my miles for use on a future (and hopefully soon) trip, although our flight was set to leave in less than 24 hours so I’m not sure I’ll be successful. If I am, we’ll try to go within the next two weeks or so.

Oh, I’m so so bummed. And now I feel guilty because I was actually mad at Mark for wanting to be there for his friend. Nice of me, huh? I was just so ready, so eager for this special family time. But of course, the world does not revolve around my travel schedule and a lovely woman has lost her husband. And our three dear friends have lost a father. And three more friends have lost a father-in-law. And six beautiful children have lost their beloved grandfather.

So, we’ll stand beside Scott and Cathy and all the rest this weekend, right where we should be. And Maine will be there in a month, standing beside the sea like it always has. The air will turn cooler and the leaves will turn colors and we’ll have our special and needed family time soon. Soon.

There is so much sadness in this journey. It’s not always at the forefront, simply because you have to keep going and behave normally throughout the day, but it’s there, right under the surface and when that surface gets scratched, it comes quickly to the top.

I went to a wake last night (something I try to avoid; and funerals feel out of the question for me these days). This was no ordinary wake. It was for a child born almost four months too soon who lived a mere eight weeks, every minute of those weeks spent in a NICU.

Let me just say that there should be no industry in this world that makes coffins so small.

It was crushing, heartbreaking, devastating. And yet there was a strong connection between me and the parents, people I honestly don’t know very well. But the mom had told me several times throughout her son’s short life that reading my story, Austin’s story, gave her hope and strength in her darkest moments. I was drawn there, like I couldn’t not drive an hour through the snow to be there and hug her and cry with her. I felt like I could relate, even though I absolutley can’t relate. I feel similar and yet a thousand times removed. What each of us has been through, what each of our children has been through, is so drastically different and yet the suffering and the fear is shared, the hope and the heartbreak we feel each day is the same.

I feel that way about military mothers (and fathers) too, not a group of people I had ever related to in the past. But there is a silent thread binding together the parents of children in grave danger, tying us to one another in our moments of triumph and in our moments of loss. Because even when we think we have nothing left, we find a tiny bit of strength to share with someone else. I’ve noticed this on the oncology floor time and again: we are all pulling for someone else; wishing only the best for that other parent and that other child.

I was told many times last night, by the parents themselves, by the parents of the parents, that they were praying for Austin. They were wishing and hoping the best for my child at the very moment when they lost theirs.

The capacity of the human heart to love and to give sometimes takes my breath away.

For Collin . . .

Every day we know we’re lucky to have Austin.

As I’ve said before, I try hard not to hover over him, I push myself to let him be a normal kid, taking risks and falling down and all that. But sometimes, I let him go too far. On Wednesday, after Phyllis’ funeral, there was an “after party,” which is sort of an ironic name for the gathering: “Phyllis’ after party” indeed. But anyway, it was at a cabin on Lake Erie, a place where Dom’s family has gathered for years. Grassy field, tables of food, a steep dirt path down to the waterfront.

So, of course, the kids all head down there. The older ones were swimming, Austin playing in the sand, Braedan climbing on the huge rock formations that jut out over the water. He wanted to explore beyond where I could see, so Austin and I decided to climb up after him. We scrambled up and down, hopping from one rock to another and ended up out on a wide flat spot overlooking the lake. I turned the other way to check out the place Braedan to which was hoping to venture, which was much too steep and slippery for a five-year-old.

Did you read what I just wrote? I turned the other way. . . and not only that, but I lingered for a moment. “It is pretty,” I said to Braedan, looking at the trees dangling over the water. And then I heard a cry, a quick scream, and turned back to see Austin’s hands up over his head as he fell between two rocks. Slipping away from me, in an instant. A split second. That’s all it takes. I was there in two seconds and could see he’d only fallen three feet down so I could easily reach in and pull him up and out. He was scratched up, banged his chin on one rock and then bit his tongue, so there was blood and he was certainly crying, but it was nothing, nothing, compared to what flashed through my mind in thsoe two seconds when all I could see was his hands disappearing from my view.

We were probably twenty feet over the water, on a jigsaw puzzle of rocks, some jutting up over one another, some with dangerous gaps in between. That night, after we were home and everyone was safe in their beds, I could not stop my mind from imagining all the gory possibilities. What if he’d fallen all the way through, down to the water and smashed his pretty little head on a rock? Or what if he’d gotten stuck, actually trapped between two huge boulders? What would we have done? No emergency vehicle could have reached where we were except for a boat. How long would it have taken before a boat with a crane arrived to move these rocks out of place? Could a boat with a crane even move those rocks out of place? I was actually thinking, “Are you kidding me? After all we’ve been through, after all he’s been through, this is how it happens? This?!”

He was upset with me too. The rest of the day, he kept asking in an accusatory little voice, “Why Mommy not holding Awtin on rocks? I want Mommy to hold Awtin on rocks!” As I put him to sleep, I apologized yet again and said, “I’m just glad you’re okay.” He looked at me with horror, like “Hel-lo, do you not see the band-aid on my chin?”

Yet again, Austin, yet again, I’m just glad you’re okay.

This one’s for Phyllis.

The mother/mother-in-law of our closest friends passed away on Sunday morning after a fast and furious battle with pancreatic cancer. She was diagnosed in late January, went through two rounds of treatment including both chemotherapy and radiation, and deteriorated rapidly in the past month. She was only 59.

This was a woman of extraordinary physical beauty, I mean a real knock-out. The kind of woman who, after people would meet her, they’d turn to Dom and say, “That’s your mom? . . . Wow.”  And just a few years ago, they would’ve said, “That’s your mom? . . . Damn!”  That was what you noticed about her first; there was no way not to. But she was warm and sweet and tons of fun. You could tell she surrounded herself with friends who laughed hard and loved hard. She adored her two granddaughters and you know they would have just loved having a grandma who let them be glamorous and extravagent and maybe a little bit naughty, experimenting with make-up or highlighting their hair long before their mother would have allowed such things.

Back in the day

Back in the day

But I was struck today, as we were driving home from her funeral, with the fact that she, as a beautician and stylist, spent her life making other people look and — this is important — feel beautiful. She, who must have always been the prettiest one in a room, gave that gift to so many others, even if it was just through a great, but temporary, haircut. She was spreading the wealth, in her own special way.

With Lola a few years ago

With Lola a few years ago

So this one’s for Phyllis. And for all those who knew her and loved her, especially Dom and Christie and Braedan’s future wife Lola. And for those who will never really have the chance to know her and love her, especially Austin’s future wife Olive.

Her life was cut short, there’s no doubt of that. But those she leaves behind feel lucky today, lucky to have had her while they did.

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