You Seem Happy

He looked across the small table at me, eyes filled with emotion and said, “You seem happy. How?”

The observation took me aback. I wish I had something clever or meaningful to say. I’m not sure exactly how I replied but I spent the next few days considering what I should have said. How? How can I be happy? Have I smoothed over the hole enough that I can be happy?

Today marks four years since I held Kylie for the last time. Four years since she breathed her last and I carried her lifeless body from our house. I remember standing at the edge of our driveway as the hearse pulled away on that cold February evening. I stared into the blue night watching steam rise with each breath – unable to shout, unable to move. Planted. Frozen with only one question rolling through my troubled mind: “What do I do now?”

Now. 

Now with this unnatural thing that has happened.

What do I do now? What do I do to lead my family through this? What do I do now for my wife? What do I do now my children? 

All nature seemed to listen to my question that night; silence its only reply. And it’s been silent ever since. Four years have come and gone – highs, lows, tears, smiles, joy, and pain. We’ve had graduations, gone on vacations, attended weddings, held babies, changed jobs… and I seem happy. 

Seem.

Am I truly happy?

If I am happy, am I betraying her? 

When I was a boy I was given a kaleidoscope. My grandfather showed me how to hold it to my eye and turn it in my hand to reveal beautiful colors in the light. I was enamored with it – constantly staring into its colorful ever-changing patterns and marveling at how it worked.

A kaleidoscope makes magic with light and mirrors. It is usually a tube containing two or more reflecting surfaces tilted to each other in an angle, so that objects on one end of the mirrors are seen as a regular symmetrical pattern when viewed from the other end, due to repeated reflection. 

What speaks to me about kaleidoscopes is that if you don’t like the pattern you see, all you have to do is turn it to reveal another. And sometimes you turn from something stunningly beautiful thinking the next pattern will be even better and find yourself disappointed. But you can’t go back. Every pattern is unique and gone with the turn of the tube.

Since Kylie died, one of the most rewarding things I do is sit with other fathers dealing with either cancer treatment or devastating loss. It is both cathartic and emotionally draining. There is little advice to offer; mostly I listen. I want them to know that I’m still here; my family is still here – whether I’ve done this right or wrong, we’re putting one foot in front of another and waking up every morning. There is comfort in knowing you’re not alone. When I was a month out from her death, there were men who did this for me. 

The statement I started this post with came from a coffee I had with a new friend – a dad who finds himself confronted with a dreadful situation few can imagine. I wish I had thought to tell him about kaleidoscopes when we talked because I am happy… sometimes. And sometimes I’m very sad. Most of the time the two are intertwined. They coexist together in my mood and temperament like those pieces of colorful glass. Often the shift from one feeling happens on its own and there are also times when I must work hard to shift the kaleidoscope when the pattern hurts too much. 

Taking from the basic science of the device, we need a light source, mirrors, and colorful objects. When Kylie died, she became the light source for my life’s kaleidoscope. There are constant objects: my faith, my wife, Kylie’s sisters, friends, work, hobbies, and more. And there are objects that will enter anew: weddings, sons-in-law, and grandchildren she will never meet. Whatever enters my life will shine in the reflection of her light.

Am I happy? Yes, at times. I sense that she wouldn’t want anything less. But the colors are ever-fluid and shift into a pattern that might make me very sad or hurt seconds after I was happy. These conflicting emotions live together in a fragile pattern. Everything – all of it – is held up to her light.

And that’s just how it goes now.  

Throwing Marshmallows to Bears

My family is forced to endure many quirks. It’s part of the price of admission to my ride and I seem to latch on to more as the years go by.

One constant is my love of roadside attractions. I absolutely adore them! The cheesier the better. Who doesn’t get the urge to stop when they see the sign for the home of Superman, Metropolis, Illinois or the world’s largest ball of string?

Years ago, I was headed to Gatlinburg with my oldest two girls when I saw a sign in Cherokee, North Carolina that said you could feed bears. Think we stopped?

Of course we stopped. We bought our little bags of bear food and soon found ourselves standing on a walkway looking down into pits that housed the massive creatures. They were looking up and waving at us for their food.

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Their food? Marshmallows.

Think of the ridiculous nature of the scene. My curly, blonde little girls, weighing somewhere between 30 and 50 pounds each at the time, awkwardly throwing little puffy balls of sugar at docile-looking 400 to 500 pound bears. At some point, I noticed my girls were actually having a picnic with them – throw one, eat one, throw one, etc. and the bears were getting restless. They never marveled at the size of the bear or the unnatural setting – they were just enjoying their marshmallows with their furry companions as if seated on a checkered blanket together.

Sometimes you witness a scene such as that and it makes you wonder at its absurdity.

But we do the same thing. Let me construct another scene for you.

In February of 2014, our youngest daughter, Kylie was in the 6th grade. We had just gotten back from a Disneyworld vacation when her knee started to hurt. Doctors initially thought it was from all of the walking we did. In March they moved on to a growth plate issue, and then in April we heard the words, “Your child has cancer.”

What I learned on that day was that if I had gotten the same cancer as Kylie had when I was her age, I would have had the same treatment. You heard that right. The treatments for many childhood cancers have changed little in the last forty years.

With all of the scientific, medical, and technological advancements we’ve made in four decades, when it comes to childhood cancer, we are still only throwing marshmallows at bears.

Marshmallows won’t stop the problem bear – they won’t even slow it down if it is really angry. You can hurl all the sweets at it you want but that bear will keep on coming. Like a low budget horror film, the more you stop to throw, the closer the bear gets with its fangs, claws, and mighty roar.

And the childhood cancer bear is getting hungrier. Incidences are up 24% over the last forty years and it is the leading cause of death by disease for children.

So what are we doing as a society?

Sadly, very little.

 Consider this:

  • All childhood cancers combined receive less than 4% of federal cancer research funding – and overall funding dollars took a massive hit in the 2018 budget.
  • Prostate cancer receives 5%.
  • Since 1980, only 4 drugs have been approved specifically for children.
  • 1 in 5 children do not survive.

I picked on prostate cancer and there is a good reason.

  • The average age at diagnosis for childhood cancer is 6 years-old.
  • The average age at diagnosis for prostate cancer is 66 years-old.

The overall cure rate for all childhood cancers combined is 83% and prostate cancer is 95%. Yet our government is spending more research dollars there than on all childhood cancers.

You tell me one 66-year-old grandfather with prostate cancer who would say this is fair! Kylie’s granddaddy, a prostate cancer survivor wouldn’t. In fact, he prayed with the rest of us for God to take him instead.

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The marshmallows we threw at Kylie’s bear were inadequate, unsafe, and in the end, ineffective. We must find new ways to beat cancer and private funding of cutting-edge research is crucial. If we stand outside the pit and trust the government to do it, that bear will keep coming for our children.

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Remember those bears that we visited when my girls were young? Soon after we left, two tribal elders fought on the bears’ behalf and the park was closed down. All of the bears were moved to a new life with room to roam. No more marshmallows hurled into enclosures. Real food.

This is what we need for children with cancer. We need to stop throwing marshmallows and work together to find the solution. Our children are depending on us.