‘Take every moment and love each other’: Family shares lessons through ALS, tumor diagnoses – Naples Daily News

Gay Valimont moves her son, 8-year-old Eli, from his wheelchair to his bed.

Through the filtered light of the sheer curtains, his bright orange and blue-striped bedroom nearly glows in the quiet of late morning. In this process of climbing back into his unmade bed, Eli belches. 

“Did you just burp on me?” Gay asks.

“Yeah,” Eli says.

“Gross,” Gay answers. 

Their chubby little beagle, Daisy, propels herself onto the bed, settling on Eli’s chest. 

“Don’t step on his nuggets,” Gay warns the pooch. 

This is a good day. Things are calm. Things are manageable. Gay can take the dirty plates to the kitchen, brush the crumbs into the garbage can and poke her head outside for a few minutes without being called back. 

Photo gallery: North Naples family navigates life with ALS, tumor diagnoses

She doesn’t have to think about everything she’s losing.  

In her head, she has a message for the world. Something she wishes she knew earlier. 

“There’s not one minute to waste.”

From the first minute Brian Valimont saw her, he wasted no time. But he almost didn’t see her. 

Previously: Mothers host Wear Orange event in Naples after National Gun Violence Awareness Day

At Atlanta’s Highland Tap bar, the crowd was shoulder-to-shoulder. In front of him, his friend tried flagging down the bartender, and Valimont distracted himself talking to someone in the throng. When his friend scored the shot and stepped back, Brian set his eyes on a beautiful blonde with soft brown eyes.

The blonde, who would become his wife, Gay, drew him into the easiest conversation he’d had with a stranger. Between words, she slammed a shot of Jägermeister and kept on talking.

“I thought, ‘Oh my god, she is so awesome,’” he wrote in an email.

Brian waited 2½ days before he called to ask her out, and a month later, took her to a wedding. In the morning, she rolled over, kissed him and said “I love you.”

She gasped, and tried again.

“I don’t love you. I mean, I’m going to marry you,” she said.

That wasn’t true; She did love him. And 13 years of marriage and an 8-year-old son later, she still loves him. She loves him so much it hurts.

It hurts because Brian is slipping away from her. Her husband was diagnosed with ALS last year. When she thinks about it, when she talks about it, tears choke her voice. 

“I don’t hear his voice anymore, because he can’t talk, and that’s the worst part of it,” she said, crying. “That’s the worst part.” 

It hurts because Gay’s son, Eli, sat on her lap and smiled with just one half of his cherubic grin.

It was the first undeniable sign of the condition they hadn’t yet diagnosed: diffuse intrinsic pontine glioma. 

A diffuse intrinsic glioma, or DIPG for short, is a type of tumor that begins in the brain stem, according to St. Jude Children’s Research Hospital. It has no cure.

These days, there is no typical day. It’s routine punctuated by crisis. 

Gay’s life is a series of hurdles to jump and fires to put out. Like when Eli would shriek from the other room, his apparent emergency a desperate need for popcorn. Or when Brian’s electric wheelchair got caught on the rug, and she heaved against it with her 85-year-old stepfather, Wayne, for hours in between running to Eli when he needed her. 

It’s better for Gay when there’s something to focus on, something to do or someone to help. It’s when she stops that the momentum crashes into her in a wave of grief. 

“When I have time to just sit is when I have time to think about … ‘my whole family’s dying,’” she said. 

Brian, 44, isn’t a fan of cliches. He, like Gay, struggled to admit his love for her. Both were divorced when they met. He can’t speak, anymore, and conducted this interview via email.

“I think the night I met Gay my soul recognized hers,” he wrote. “I still didn’t admit I loved her for a month and a half, because my stupid ego said I was divorced just 8 months ago, but I knew I loved her. I don’t know how I knew — everything was right. There (was) no apprehension except what I conjured, and I kicked my ego and fear to the curb.”

Brian is a human factors engineer at Arthrex in Naples. He loves the fact that Gay is a combination of the best contradictions. He loves that she’s intelligent, organized, inspiring and social. 

He loves her bleeding heart and the ferocity with which she fights. 

“She is strong beyond her own recognition. She’s beautiful and funny, and I still have more fun with her than any of my other friends. She’s the great love of my life,” Brian wrote. 

Gay, 48, spent three years as a volunteer leader with the Florida Chapter of Moms Demand Action for Gun Sense in America, though she’s a stay-at-home mom now. She got involved after Sandy Hook, when Eli was only 6 months old.

“I always said it was for Eli,” she said. 

There are those contradictions, though. No matter how much Gay does, Brian knows she doesn’t feel like it’s enough. 

“She will sacrifice all her time and energy to help someone — far beyond what any ‘sane’ person would offer,” he wrote. 

Gay does, however, get agitated about a few of his habits. Like his propensity for leaving beer bottle caps everywhere when he drinks, or how when he would put the dishes away, he’d leave the cabinet open.

Other than that?

“I tell people a lot that this whole thing has just been so painful because I’ve never, ever been mad at this man. Ever. In 13 years of marriage,” Gay said. “He can talk to anybody and make that other person feel like the most important person in the room.” 

The couple didn’t think they’d get pregnant. They started fertility treatments after testing revealed they had a 1-3% chance of conceiving, though they eventually decided to stop. 

When Gay wasn’t feeling well for a few days, a friend thought mimosas would be the perfect pick-me-up. Gay wasn’t so sure. She went to the store and bought Champagne, as well as a pregnancy test. She told the cashier, she’d take the test first and wouldn’t drink if it was positive. 

She did not drink. Instead, she and Brian celebrated. 

“Baby, I’m pregnant,” Gay said, as they teared up and embraced.

“But we live in a shitty school district,” Brian said, thinking ahead as he does. 

Eli entered the world on May 21, 2012, with Brian by the bedside. Gay remembers her hair was red and she was 39 and the NBA playoffs were happening. Gay doesn’t remember who was playing. But she remembers holding Eli in her arms for the first time. It doesn’t take much to describe the feeling. 

“Amazing,” Gay said. 

Since Eli was a toddler, he and Gay sang and danced in their seats, rocking out to the car radio. 

Eli, a smartypants by Gay’s standards, with a strong T-shirt game by his aunt’s standards, still grooves with his mom in the car, blue eyepatch — for his double vision — and all. 

“There is a time where I never thought I’d want to listen to Justin Bieber’s ‘Sorry’ again,” Gay said. 

“That is a moment of pure happiness, and I so love to hear them sing,” Brian wrote. 

The family noticed, in February 2020, that Brian occasionally slurred his words, even when he hadn’t had a drink. He didn’t realize he was doing it.

Then, a month later, the family was walking Daisy. Gay handed the leash to Brian, but Brian couldn’t do it. 

“He couldn’t pick his feet up,” she said. 

Eventually, after a series of testing, a process of elimination confirmed their fears: Brian had ALS. 

ALS — amyotrophic lateral sclerosis — is also known as Lou Gehrig’s disease and involves the degeneration of nerve cells in the brain and spinal cord. Reports suggest between 12,000-15,000 people in the United States have ALS, though no one knows exact numbers, according to the CDC. The average life expectancy for a person diagnosed with ALS ranges from 2-5 years.

Patti Stanco, Southwest Florida’s regional program manager with the Florida chapter of the ALS Association, acts as a liaison at Lee Memorial’s ALS clinic.

“The tricky thing with ALS is it starts and progresses differently with everyone,” Stanco said in an October interview with the Daily News. “I think at the beginning, there’s a ton of grief and a ton of sadness, because it’s a terminal illness and there’s no treatment and no cure.”

As with everything else in their lives, grief is something Brian and Gay have shared. 

“Gay and I grieved for about a week after my diagnosis, then I dealt with it as I might with any problem. I researched it and read a couple textbooks. We found the best medical team and I’ve entered a clinical trial. We’ve done everything to lengthen my survival. That’s how (I) deal with each day, a series of obstacles I have to overcome to accomplish the goals for that day,” Brian wrote. 

Physically, Brian’s body is failing him in his ways his mind is not. He can work remotely, using his right hand. It’s important for him to support his family, to contribute. 

He made a vow to Gay, after all.

“I promised Gay that I wouldn’t leave her. I need to maximize my survival time for the possibility of new treatments,” Brian wrote. 

This spring, the challenges they faced as a family grew exponentially worse. On March 17, Gay’s mother had surgery. When Gay got home, Eli came and sat on his mom’s lap. He smiled with only one half of his face. 

Her first thought was Bell’s Palsy — something doctors agreed with at the emergency room. She followed up with her family doctor and, the next day, sent Eli back to school.

At 9:30 a.m., the school called to tell her Eli couldn’t walk. He couldn’t even stand. He was too dizzy. Ten hours later, they were airlifted to Miami. 

Gay remembers staring at Eli from the helicopter’s jump seat, neither of them able to hear each other. Instead, she used her phone to write notes, telling Eli she loved him. He gave her a thumbs up. He fell asleep. 

“I just cried,” she said. “I thought, ‘Oh my God. He’s going to die before we get there.” 

When ALS robbed him of his voice and Brian could no longer speak, he re-sent all the old voice messages he had recorded for his wife over the years, things about traffic and the mundane and little morning greetings. At the hospital, on the opposite side of the state, alone with her son, Gay pulled up her phone and listened to Brian’s voice.

“I listened to them over and over again because I needed them to be there,” she said.

In a similar sense, Eli found a way to be there for his mom while they waited for testing. 

A combination of a hunger and a recent interest in horror movies put Eli into a mood. He told his mom that if he didn’t eat soon, he’d kill her and eat her carcass.

“If you’ve never seen an 8-year-old starving, oh, get out of the way,” Gay said. “I didn’t know he knew the word carcass.” 

It was a brief moment of levity. Then she learned her son’s diagnosis. 

“It is terminal,” Gay said. “It may shrink. It may go away. But there’s no question that it will come back. It’s just when and how long.”

Gay and Brian, in the meantime, are doing everything in their power for their son. 

It’s why Eli has daily radiation treatments, his small head held still in a piece of plastic, a laser like a crosshair aimed just under the edge of his ears to zap the tumor. 

In moments of stillness, Gay reflects on the ways things changed. She and Brian knew, or at least they thought they did, that eventually, Eli would grow up without a dad. 

“It’s my job to take care of him. So I’ve been doing a lot to beat myself up,” Gay said. “I just never imagined that my son wouldn’t go to middle school or high school.” 

Grief for his son weighs heavy on Brian’s heart, too. 

“I don’t think I’ve fully dealt with my son’s terminal diagnosis,” Brian wrote. “When Gay and I have a moment to ponder, we just bawl.” 

Turning off Immokalee Road into Palm River Estates, the signs greet passersby with the same message: “We (heart) Eli + Brian.” Those same signs pop up throughout the neighborhood and down the Valimont’s street, some with a scattering of pinwheels in front, turning in the lazy afternoon breeze. 

“We’ve had an outpouring of people helping us,” Gay said. 

Leah Valimont, Brian’s sister, recognizes her brother as a smart, driven and supportive husband. She sees Gay as strong and steadfast in her convictions. She sees Eli as a sweet, funny kid. 

“People probably just see the goodness that they stand for,” Valimont said. “People just see that in them and know they’re good people.” 

The family’s pool table is no longer functional. It’s covered corner-to-corner with gift bags, balloons, bubble wands, sweets and treats. A pile of mail on their countertop includes messages and letters of encouragement from complete strangers. One morning, Gay walked outside to find an assortment of painted rocks scattered around the gravel on the sidewalk up to their house.

She still doesn’t know who put them there. 

“It’s incredible,” Gay said. “It’s so important what you put out. And when you need something, people show up.” 

It’s a buoyant thought that keeps her afloat in a stream of sorrow and medical bills. 

“On top of everything as else, it would be nice not to have to deal with going into debt as well,” Gay said. “Although, I don’t care. They can put me in jail when it’s all over.” 

Still, donations continue to roll in to two separate GoFundMe pages, one with just under $90,000 of its $100,000 goal and the other with just under $40,000 of its $50,000 goal. A Caring Bridge site the family set up to directly share updates has received more than 11,000 visits. 

Brian, a Sigma Chi member when he attended Embry-Riddle Aeronautical University, has a group of longtime friends who stop in to visit whenever they have a layover in the area. 

Pilot Chuck Bonini met Brian in 1995 and hasn’t seen his friend for almost 20 years, but he stopped by to say “Hello” on a late May morning. 

“It’s so good to see him,” Bonini said. “I never met anybody that didn’t like him.” 

Brian has never called Gay by her name. It’s always “babydoll.” 

She doesn’t need a phone’s worth of voice messages to remember her favorite Brian greeting. 

“Good morning, gorgeous.”

Devastated doesn’t quite cover what it’s been like for Brian to see how his and his son’s diagnoses have affected their family. 

“I’m heartbroken that the diseases have affected us, and the emotional, physical, and mental is greatest on Gay,” he wrote. “I’m also extremely frustrated that I can’t help take care of Eli or Gay. Literally, everything falls on her shoulders. I don’t know how she is still standing at the end of each day.” 

Gay, for her part, won’t rest. 

“For me to tell you that I’m sad — there aren’t words to describe it,” she said. “But I know that as long as Eli is alive and that Brian is alive that I’ll do my best to make sure that their quality of life and their treatment, everything they need, they will have. But I cannot see a life past that.” 

If she has it her way, nobody would be arguing with their kids about things like popcorn or grilled cheese or apple juice, the latter of which are Eli’s latest fixations. If he asks for it, he gets it now. 

“They work very hard for me,” Eli said of his mom and dad. 

Eli said his parents are funny. That they’re awesome. He agreed with Gay that, even in times like this, they have fun together. And he’s bummed, on a late April afternoon, when he finds out he missed his opportunity to see the neighborhood kids, the bike gang, Gay calls them, who came to visit Eli just before he got home. 

Eli reaches out, mid-conversation, putting a hand on his mother’s face. He leans over and kisses her on the cheek.

“That’s what I regret right now. That I ever yelled at you about anything. Not everything,” she clarifies. “Some things.” 

No moment is too small for Gay. 

She sucks the rest of the apple juice out of Eli’s empty straw and puts the cap back on so he can finish it later. On their lanai, she draws Brian’s head to her chest and he looks up into the same soft brown eyes that met his at that basement bar all those years ago. 

“Love them every day,” Gay said. “Take every moment and love each other.”

Brian wrote that their love as a family has not faltered through the tribulations they’ve faced. Physical survival may be in question, but not love. 

“I hope she finds peace. Wherever that is. Whatever form that takes. I hope that it finally comes to her,” Brian wrote. “Eli and I will be waiting for her.” 

Andrew Atkins writes about food and features for the Naples Daily News. Contact him via email at andrew.atkins@naplesnews.com. To support work like Andrew’s, please consider subscribing: https://cm.naplesnews.com/specialoffer/

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