This post was the hardest thing I’ve ever written, and I apologize if your heart breaks like mine.
I’d nearly forgotten.
It’s been eight years since the traumatic birth of our son. Benjamin spent 14 weeks in the hospital and needed oxygen and other breathing assistance even longer. With that much time in and out of hospitals, a family sees regular examples of how precious the miracle of life is. And how fragile.
When you emerge on the other side of your ordeal, you are stronger in many ways. You are grateful that your loved one has survived. You consider yourselves lucky because many families have had it worse. Unimaginably worse. Over time, your heart and mind are healed, but permanently damaged by some piece of emotional shrapnel you can never remove. Forevermore, when you see children suffering, that splinter of old anguish is a twisting knife in your heart.
It’s not something that many people discuss, and the closer you are to it, the less you try. Whether it’s the pain, the sadness, or the desire to talk about happier things, many of us don’t seek to have those uncomfortable conversations with anyone we know. Eight years ago I tried so share some of what I was seeing, but it was too sad and too depressing: Things I Heard In The Hospital That Broke My Heart. I wrote that piece so I could always remember, and because I knew I’d want to forget.
Recently, I learned about the four-year-old son of my wife’s high school friend, and all the memories came crashing back.
We didn’t see the family socially, so I’d never met James or his parents. We learned he’d been diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare, inoperable tumor which is found on the pons region of the brain stem. This type of tumor occurs almost exclusively in children 5 to 9 and has no cure. It’s a blessing that only 300 children are diagnosed with DIPG each year.
That particular placement impacts gross motor skills and the ability to speak. If you’ve had children in your life, you’ve likely marveled as they rapidly developed in these key areas. It’s like watching life on fast-forward. If you’ve witnessed this experience, you begin to understand the tragedy when that progress slows, and then reverses. I cannot imagine watching your son transform from an athletic and articulate child, to a boy that has difficulty moving and can no longer talk. And if that wasn’t terrible enough, it’s a terminal condition.
In a world often filled with horrors, this disease seems impossibly cruel.
For the last few months, I’ve been watching this child slowly regress through my wife’s grief, as she read the family’s unbearable updates. On a Saturday a few weeks ago, came the day of James’s benefit. A chance to raise money and offer a modicum of comfort to a family that would be unable to find solace for years to come. As if in response to the weight and sadness of the day, heavy gray clouds hung descended, releasing dreary, cold rains that chilled spirits and bone alike.
And yet, inside the sun shone through James. He was still very much a little boy, eager to play and laugh and eat.
When I shook hands with James’s father, Pat, there was a connection that perhaps only fathers share, an understanding of the importance of protecting your family and the despair that comes when you fail in that duty. As I looked into his eyes, I saw the face of a man who, understandably, was barely keeping it together. In that situation, you try to take a portion of that paternal love and strength and pass it on to someone who needs it more. You pray that your empathy doesn’t overwhelm you, because if your walls crack, his most certainly will crumble. I’m not sure I’ve ever tried to convey so much meaning into a handshake.
After that, I spent time playing with James and donated some money – both of which felt inadequate compared to what I received in return: some precious time with a radiant life. My feeling of hopelessness remains, but it’s somewhat offset by the joy I saw in his eyes and the love shared by all who knew him better than I.
Upon returning home, I put my grief aside, for it felt like a selfish thing. It does no good for James or his family or the world. For my part, I can tell you about his smile, which still came regularly and could light up any room. I can talk about his sense of humor – how he delighted in sharing false mustaches with the other kids. I can share with you how he savored the food he ate, gratefully consuming everything his family brought to his mouth. And I can convey how he was loved, by a room full of people willing to give up anything in the world to make him better.
While there is very little hope for him, he has given hope to all of us. He has shown us how much power there is in a child’s smile, how much strength there is in a twinkling eye, how much life there is in silent laughter.
Yet still I cry for the unfairness of it all. For the child just beginning to understand how wondrous the world can be. For a family robbed of their most precious treasure.
And so I write. The least-worthy beneficiary being myself, a person needing to process the emotions felt toward a child I’ve met once. I write to help others understand and remember what tragedies our fellow humans are enduring. And I write to immortalize a four-year-old who made an indelible mark on the hearts of anyone who met him, even if only for a few hours on a rainy Saturday afternoon. It is that tremendous impact by a human being that gives me hope, and perhaps others, too.
This will be a recurring theme here: donate your time and money and talent. As with every disease we are going to conquer, we all take small steps, both financially and socially. We raise awareness; we raise money. We do what we can, knowing that right now, it’s not enough. Not for the life we desperately want to save.
I’ve added links at the bottom of this post for those who would like to donate to James’s family, or to other worthy organizations.
Hug that person you love and never forget to keep doing that. Sit on the floor and play or call them on the phone. We never want to regret that we didn’t have just one more day.
© Michael Wallevand, September 2017
Organizations I support:
- James “Ticky Man” Bailey Fund
- Feed My Starving Children
- Children’s Hospital of MN
- Boy Scouts of America
- Girl Scouts of America
- Human Rights Campaign
- The Thomson Reuters Foundation