I’ve received a lot of requests for a copy of my speech that I gave at the Team Lifeline Pasta Party the night before the Miami Marathon. Rather than send it out in emails, I’m reprinting here.
As a writer and an educator I spend most of my time immersed in fiction. If I’m not writing it, or reading it, I’m probably editing it or grading it. I’m well-versed in the tropes of literature, the patterns of plot development and the character arcs that populate the stories and novels I love.
But when it comes to pediatric illness and medical crises, there is no formula to follow. There is no script with ready-made lines to deliver at the perfect moment. No clever plot device to tie everything up in a convenient concluding chapter. When my son was diagnosed with a brain tumor I found myself in a story I wasn’t prepared for surrounded by characters and settings I knew nothing about. It was a gut wrenching moment made all the more absurd by the proximity to my own breast cancer diagnosis a year prior. I remember commenting to my brother that I could never have written a story like this because it would seem so ridiculously contrived. Who would ever believe it? But there I was, in the Emergency Room on a Friday night, talking to doctors and residents who suddenly became principal players in a story no parent ever wants to have written for them.
Whenever a crisis hits, after the initial shock and panic, you have to switch to the “getting down to business” mode that takes over from someplace deep in your psyche. We were thrown into a new world that required navigation and negotiating skills and learning a vocabulary that was way over our heads. We spent time going from doctor to doctor, researching surgeons and facilities, contacting relatives who knew doctors who knew other people, and fought to find the best care for our son. We looked at every medication, every study, every prognosis. We spent hours on Google and read research articles from NIH side by side with Wikipedia to help us decipher the terminology and medical jargon that suddenly framed our every waking hour.
And we did our best. We needed to heal our son. We needed to get back to the original story of our lives that had been playing out before this inconceivable plot-twist that shifted our world. But while we were dealing with medication and side effects, surgery and hospital stays, bills and insurance, we ignored a much needed piece to get us through our day to day. It was a piece we weren’t aware was crucial to healing my son.
It was the Chai Lifeline piece.
We had known about Chai Lifeline for years. My husband and I would go to the annual diner, watch the videos of kids in Camp Simcha and make our donation thinking we knew what Chai Lifeline was all about. But to be honest, we seriously had no clue.
Insomuch as a brain tumor sabotaged my family’s story, Chai Lifeline rewrote it. It was a rewrite that was populated with new characters -angels and superheroes who showed up at the hospital with food, with toys, with comfy blankets, with things we didn’t even know we needed. They navigated our insurance nightmares when certain tests weren’t covered and got us into doctors offices that usually required wait times our situation would not allow. They held our hands, literally and figuratively. Without pretense. Without judgment. Without expectation of even a thank you.
And they taught us about happiness. While we focused on the medical angle, Chai Lifeline reminded us that our crisis was not the protagonist of our story. At the center of it all was an 8 year old boy whom we forgot needed his childhood.
Chai Lifeline concentrated on that. They sent him to Disney. They brought him Legos. They visited him at home and played games with him. Most of all, they didn’t talk to him about MRIs or tumors or surgery. They made him feel normal. Because while my husband and I had switched into the roles of neurotic, hovering, worried parents, Chai Lifeline did everything to give back to my son a piece of what was lost. They gave him the chance to be a kid again. To laugh. To smile.
They understood what we had to learn – that happiness is as critical to healing as medicine.
We saw that in action throughout the year but even more so when he went to Camp Simcha last summer. I didn’t believe Ellen Weiss, the Chai Lifeline Southeast Regional Director when she told me it was the happiest place on Earth. I was worried. So worried in fact that after I had filled out and submitted the application I emailed the camp to tell them that we had made a mistake and that no, he was not going.
I’m glad I gave in. Because Camp Simcha became one of the most important chapters in our ever-evolving story.
Camp Simcha is a place that does not focus on illness and pain, but on joy and laughter. It is a place for kids to escape the weariness of their non-fiction world of hospitals and offices and live for two weeks in a place out of a fantasy novel. For my son, it was transformative. He didn’t feel different. He was able to talk to kids about things he couldn’t discuss with anyone else. He was away from his neurotic parents. And he was free from all the stress and worry that surrounds him on a constant basis. Camp gave him strength to face the year ahead and empowered him to stare down his challenges. He summed it up best when he came home and was starting school. I gave him a pep talk, about not worrying about his grades, about school. Told him how proud we were of him. And he looked at me and said, “Ema, I’m different now. I can do anything.”
That is what Chai Lifeline does. It is an organization that changes lives through love, through joy. They transform pain through Nerf gun fights and hospital mannequin challenges. They reframe the stories, if only for a moment, but they are the moments that carry children through darker days and difficult times.
Everyone here tonight is a part of that story. We are here tonight to celebrate, and when I think of what Chai Lifeline did for my son, I can only think of it in terms of happiness, not tears. Joy, not pain. Comfort, not loss. It is why I am running tomorrow. I am running because my story is one of many Chai Lifeline stories. Because they are stories I have been privileged to be a part of with parents I’ve met whose children are running much harder, unkinder marathons taking place in hospitals and doctor’s offices. They are stories of children in Camp Simcha. They are stories about happiness in pain, comfort in loss, and smiles through tears.
Your training – the 5AM runs, the steps on the concrete in cold and in darkness – everything you have done that has brought you here today ensures that these stories go on. And in truth, your work, your fundraising, your run tomorrow absolutely gives you a solid chapter in this book.
It might come as a surprise, but I am not an athlete. I’ve never run before this. It should be interesting. But tomorrow I run with a team of superheroes. Tomorrow I run with you, the supporting characters in the book that is still being written. We run for the kids that can’t. We run for the kids we’ve lost. We run for the kids who need to remember that they are kids even for the small moments in their arduous, challenging stories.
We run with Team Lifeline. And this story, well this story is nothing short of an absolute epic. Thank you for being a part of something incredible. Thank you for being a part of my story.