I’m Warming up to Christmas

My morning routine revolves around coffee and darkness broken only by the glow of a laptop screen. I don’t see the need to turn on the lights. I like the dark; I don’t know why. Oh sure, I occasionally step on things left in the floor. But as the kids have gotten older there seem to be fewer obstacles in the path. My wife doesn’t like coffee. I don’t know how she has survived this far. She also doesn’t like darkness. The minute she enters the room, she turns on a lamp.

This is also true at Christmas. Although we have lights strung on a massively fat tree, across our mantel, over the entry arches, and (need I go on) covering every available surface, I don’t turn them on. In fact, I haven’t turned on the tree since I checked the lights we strung on it. I don’t know why. I don’t see the need, I suppose. She will awaken soon and make the rounds turning on switches and plugging things in until the house is awash in color and light.

Funny how that works – how two people alike in so many ways can do things completely differently. We grieve differently, too.

When confronted with our loss, I tend to stuff it down until it is convenient whereas she lets it flow. Her way is probably healthier, but neither is wrong. They are just different.

But then December comes and even I can’t stuff it down. Colored lights… cry. Giant Christmas Pooh… cry. Reindeer ears… cry. I see her face in every decoration. Every little thing we unbox holds a memory. Part of me wants to ship all the boxes away instead of opening them; to close the lid on the entire thing and not bring this emotional mess to the surface. But Kylie loved Christmas. Her last one was so special because despite her frailty she demanded we keep every one of our traditions.

 

Then came the first one without her. Everything was so raw and fresh. If we hadn’t been trying to soldier through for the sake of the other girls, I might have gotten approval from my Christmas fanatic to forgo the lights and decorations that year. The second was hard also but we knew what our triggers were. Some of them, at least. We were able to anticipate most of the more difficult things and that helped us negotiate the season. There is no avoiding everything, though, because you stumble into things like what you think is a random piece of fabric but was actually her headpiece when she played Mary in the Christmas play. And you cry.

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This is our third Christmas without Kylie. I want to preface everything I am about to say with this: I am not getting over her loss and I never will. I will miss her every minute until the day I follow her into the grave.

I haven’t done anything differently, but I find that this Christmas seems to be bringing me more joy than pain. Packed away with the elves was a note she had written and sleeping bags she had made for them while bedridden. It was the sweetest note and I could hear her speaking it. Surprisingly, I smiled. It was a touch from her that I so desperately needed. This Christmas has been like that. When I look around at the ridiculous quantity of lights and decorations she loved, I feel her more and it doesn’t (always) bring me to tears. More often, it warms my heart.

Love and pain; joy and sorrow… they are uniquely intertwined. Without love, loss wouldn’t bring pain. The absence of joy would render sorrow irrelevant. It is an unfortunate fact that we have no means of protecting that which we love. Ultimately, their safety and security is out of our hands. When we come to peace with that and still choose to love, we are setting ourselves up for pain because loss is inevitable, the only question is when.

When the loss comes, we grieve it in proportion to the amount we loved. And in a strange way, the pain of loss perpetuates the love. The sorrow of a memory that causes tears in one moment often brings her smile to mind the next. The emotions are mercifully mingled together and I would rather feel them all than feel nothing.

When I came into the darkness this morning, I turned the tree on and plugged in our big Christmas Pooh. It wasn’t a conscious decision, I just did it. I don’t know why. With my coffee in hand I sat in their glow and brushed a few tears away, but mostly I smiled.

I think I’m warming up to this Christmas thing.

 

 

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Crossing a Threshold

Smiley for Kylie is a non-profit dedicated to finding a cure for childhood cancer. The mission was not hard to decide upon because it was exactly what Kylie told us to do before she died: cure childhood cancer. I am excited to say that we just crossed a threshold. Since Kylie was diagnosed in April of 2014, her impact has now driven over $100,000 into childhood cancer research.

Our little non-profit ended 2017 with a flurry of giving that took us to $111,000!

I am blown away by the generosity and hard work of family, friends, and people who never even met Kylie. Kylie’s family would also like to thank our Board of Directors who support us in everything we do. We love giving away money to fund research and I would like to share a little backstory that will help explain what guided our decisions.

When Kylie was diagnosed with Ewing’s sarcoma, my employer urged me to have the DNA of her tissue mapped. He was funding genetic research at MD Anderson and facilitated the testing of Kylie’s tumor. The hope was that the results would show which genes were over-expressed and causing the mutation of cells. At the time, this type of research was making its way into adult treatments for cancer. We soon found out that with children, we weren’t there yet.

The mix of chemotherapy and radiation she received was decades old. In fact, if I had gotten the same cancer when I was her age, I would have received the same treatment. With all of our advances in science and medicine, most treatments for childhood cancers have remained the same for forty years. While our doctors received complete DNA results from her tumor tissue, they had no use for the data. Her treatment didn’t change one iota because just three years ago, genetic testing had yet to impact care in children. But that is changing.

CURE Childhood Cancer has committed $4.5 million so that Children’s Healthcare of Atlanta can establish The Aflac Cancer Center’s new Precision Medicine Program. Joining a handful of existing programs, this innovative entity will take the fight against childhood cancer to the genetic level by identifying the root cause of the child’s cancer and targeting specific therapies directly to the wayward cells. No longer will we paint with a broad brush. Soon we will be able to isolate the offending cells and destroy only them. With success, this could become frontline treatment in the future; a child is diagnosed, their genes are sequenced, and a treatment is tailored specifically to their cancer.

Based on our cancer experience, this is a great step for children fighting cancer and Smiley for Kylie is proud to be a part of it by awarding a majority of our funding to CURE for this purpose. I wish we had more to give.

Another portion went to 1 Million 4 Anna – a non-profit that focuses solely on Ewing’s sarcoma research. The organization was founded by the Basso Family in honor of their lovely daughter, Anna who, like Kylie, succumbed to the disease.

Could 2018 be the year of great breakthrough? We hope.

And how would I feel if in 2018 our little organization had a small part in finding a cure for childhood cancer? I would be ecstatic. It would be the realization of my newfound and unfortunate life purpose. But I know there would be that small side of me that would ache that it was discovered too late for my little girl. I admit that I’m jealous now when I see good results posted and when I see the bell rung signifying the end of treatment. It hurts just a little because in Kylie’s ten months of treatment, we never got good news.

It doesn’t take long for me to snap out of it. Of course I want every child to beat this disease. I’m jealous, not inhuman. That is what Kylie would want, too. And I figure if I can be just a little more like her, maybe we can make a dent in this thing