Friday, June 10 2016
One doesn’t need to talk to Nicolette Deveau for very long to recognize that she wears her heart on her sleeve.
A cliché, I know, but understand that I’m not speaking figuratively. It’s right there, plain as day. The tattoo sleeve of her right arm features a mural of images meant to evoke memories of her son Reggie, her heart, who lost his battle to Neuroblastoma in 2011. He was five years old.
The tattoos are expertly done, colorful and beautiful. Depictions of the many things that remind her of Reggie. His name. His birthday. The likenesses of her son’s most beloved characters: Scooby-Doo, Mario and Yoshi, SpongeBob and Patrick. Daffodils sprout abundantly along her upper arm, the symbol of hope in the fight against cancer.
And while these tattoos serve as a means of keeping the memory of her son alive and with her always, it’s clear that the loss is not something she forgets for a single moment of any given day.
“The bad days never get better, but they do come less often,” she says. “It’s tough. People ask me how I can get through things, how I stay strong. If I didn’t channel it into positive energy, I would be miserable. I would probably break down. But I can’t. I have to find a purpose for my days. There needs to be a reason. I have to find positive parts of it.”
As the father of a four year old myself, the most notable among the images on her arm is an exact replication of Reggie’s signature, all six letters of his name represented in his own handwriting. They’re not quite placed in order or in a linear fashion, but I’m familiar with such precious handwriting. I’m taken by how well his letters are formed, especially the “R”. By comparison, my son’s “S” is a near exact emulation of the Zs in Billy Madison’s cursive “Rizzuto”. If you haven’t seen the 90’s Adam Sandler film, imagine taking a piece of chalk and scribbling unplanned and erratic lightning-bolt-scribbles down a chalkboard. I mention this letter only because there is another prominent “S” on her tattoo sleeve.
It is the emblem of a hero, a force that fights for what’s good, of a person who strives to make the world a better place.
Superman was Reggie’s hero.
Reggie was Nicolette’s hero.
Now it’s Nicolette’s turn to put on the cape for her daughter Brookelynn, Reggie’s younger sister, who was only two when her big brother passed away. Nicolette has proven that she is more than up to the task. These days she spends her time devoted to raising awareness about pediatric cancer and she’s going about it in true superhero form.
When we meet, it’s been two days since she’s completed the Boston Marathon, running for Mass General Hospital, who will soon be honoring her at the one hundred, a high profile gala that honors those whose commitment to the fight against cancer inspires others to take action. About halfway through running the marathon, her knee began to swell up, causing her immense amounts of pain. But, as superheroes do, she navigated through the excruciating pain for miles and miles to finish the race. Her young daughter met her just before the finish line and held her hand as she crossed, a little beat up, but victorious.
This is a bit of a role reversal for Nicolette, as she’s grown accustomed to being the one who does the beating up. I’ve spoken to many Haymakers for Hope alumni, and while it’s common for past participants to continue to incorporate boxing routines into their ongoing workouts, Nicolette is the only one I’ve met who became, and continues to be, a boxer.
After fighting in 2014’s Belles of the Brawl event (and winning her match), she’s continued on, fighting in other boxing charities such as Lights Out for Leukemia. She’s become such a talented and fearsome athlete in the ring that she’s even taken on the challenge of fighting in Boston’s Golden Gloves events, stepping into the ring to challenge other talented and experienced boxers. While Haymakers was her introduction to the sport, her participation was not some fleeting transformation.
Nicolette Deveau is a boxer.
And while she may continue to take part in other marathons in other cities around the country in the future, don’t count on marathon running to knock her out of the ring.
“The whole time I was running [the Boston Marathon], I was thinking ‘I can’t wait to get back to boxing,’” she says and then adds with a half-serious laugh, “I really miss punching people.”
Brookelynn is lucky to grow up with a role model like her mother, a woman who gives her all, physically, mentally, and emotionally, to make a change in the world, in hopes that one day other families won’t have to live through the devastation of losing their own child to cancer.
Parents are naturally heroes to their children. But it’s when things are the most difficult that superheroes lead the way, teach us how to live, show us how to fight, demonstrate by example how to persevere. To take something devastating and use it to inspire. To find our greatest strength in the face of our weakest moments.
“Brookelynn is older now and is starting to understand what happened,” Nicolette explains. “She’s starting to comprehend what cancer really is and what happened and it makes her scared. The other day she came out of her room hysterically crying, telling me that she was afraid of dying. I told her that she’s not going to die, but she brings up how Reggie died. And I can’t tell her that I’m going to keep her safe, because in many ways, I can’t. I can’t tell her she’s not going to get sick. I can’t promise that. So I just picked her up and held her and cried with her. I was at a complete loss for words. It’s the worst thing in the world as a parent not to be able to console your child. You want to say the right things, but for the first time I was speechless.”
“Everyone has to die. Unfortunately it’s part of life. That’s why I like to bring Brookelynn to my fights. To show her what we can do while we are here, how to live the best way we can. That’s why Mommy does the fundraisers she does. To try to share our story and bring awareness about childhood cancer. So that one day, less children die. I like to bring her along with me so that she can see that there are things we can do to be proactive and not just reactive.”
Proactivity is a touchy subject for Nicolette, specifically as it pertains to the gains being made in the field of pediatric cancer research. Speaking with her, it’s clear that the manner in which our society is approaching treatment for children with cancer is something that does not sit well with her, and rightfully so.
“Children get 4% of all the funding from the American Cancer Society and they need more than that,” she tells me. “It’s terrible. Most of the medicine we are giving kids has been around for twenty years now, most of it not even FDA approved. There’s nothing new. They’re all trials designed for adults. Once a child is on one, they have to be off of it for so many months before they can start a different treatment. Reggie didn’t have months; he was too sick for that. With the cancer he had, if he relapses after the first course of treatment, it’s terminal. You get one shot.”
Cancer kills more than 2,500 of our children each year. More than 13,500 children are diagnosed annually. These are terrifying numbers. But, speaking personally, the most concerning number of them all is 4%. Fundraising efforts for cancer research seem ubiquitous, perpetual, and this is a wonderful thing; but how is protecting our children not the top priority when it comes to all those millions of dollars that are raised?
“In today’s age, with today’s medicine, why aren’t we working harder on a cure for pediatric cancer?” she wonders aloud. “Hopefully, by participating in events like Haymakers, I can contribute in some way to a future where less kids are dying.”
It’s impossible for me to have this conversation with Nicolette about all the amazing work she’s done to raise money and awareness for finding better treatments for pediatric cancers without imagining myself in her shoes, having to navigate the loss of a young child, a child close in age to my own son. I’d like to think that I’d be out there doing what she’s doing, finding strength in personal devastation, using the experience of my own pain as a means to do all I can to prevent others from that same experience. Or even more simply, I’d like to think that I’d be like her in not shattering into thousands of broken pieces. I’d like to think I could be a superhero, but I can’t know that, not today.
If I could have one wish it would be that I would never need to know.
The conversation returns to her tattoos and she shows me another, a favorite quote, etched on the inside of her right bicep.
It reads, “Life isn’t about waiting for the storm to pass; it’s about learning how to dance in the rain.”
It’s a beautiful day when Nicolette and I part ways. The sun is shining. There’s barely a cloud in the sky. And yet storm clouds will come and no one, young, old, or anywhere in between, can ever really hide from the rain.
But it seems as clear as can be, as clear as that beautiful spring sky, that it’s high past time for us to invest more resources on little Superman umbrellas and toddler-sized galoshes.
It’s time we do more to keep our children dry, to do more to protect them from the storm.
***Chris Randa is a freelance writer, film producer, and special education teacher. He lives with his wife and son in Millis, MA. Check out his work at www.kerpunkerplunk.comand follow him on Twitter at @ChrisRanda