Michael Hubbard is shy at first when his mother, Nancy Reyer, programs a short phrase into the device that allows him to communicate. The yellow sound machine rests on a table that extends out from his wheelchair. It has several buttons that can play a recordable phrase.
Ms. Reyer has just programmed it to say, “Hi, Joe. How are you?”
He hesitates at first, even as Ms. Reyer encourages him to press it. His arms are both in braces — his right arm secured at a right angle with his hand pointing upward, making it more difficult for him to move. The braces, which mobilize his arms for two hours a day as exercise, are part of his daily routine at Peconic Bay Medical Center’s skilled nursing facility, the place he calls home.
Nearly 30 minutes passes until it happens.
“Hi Joe, how are you?” plays over the machine without any prompt. Michael’s face lights up with his enduring smile. His voice rises for the first time as he appears to try to muster a word.
“See that? And now you’re proud of yourself,” his mother says to him. “Good job!”
It’s been four years since Michael returned home to Riverhead after rehabilitation at Blythedale Children’s Hospital, a short-term care facility in Westchester County. And it’s been six years since the exploding gel candle accident that left him with severe burns across his body, forcing him into an induced coma that led to anoxic brain damage.
The boy who was once the class clown and a standout bowler, soccer player and drummer now spends his days striving for goals like pressing a button. He’ll turn 21 in August and it’s been three years since he was wheeled across the Riverhead High School graduation stage to receive an honorary diploma.
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In the aftermath of Michael’s accident, as the Riverhead community rallied in support, it appeared that Brendan House on Sound Avenue, which is run by the nonprofit New Beginnings, would be his final destination. The long-term care facility for people with traumatic brain injuries, which was under construction at the time, seemed a perfect fit for Michael’s needs.
As time passed, however, and the project was delayed further and further, Ms. Reyer said it became clear that Michael would be better off at the PBMC facility. His around-the-clock care has been “above and beyond what I thought,” she said, and Michael has taken a liking to many of the nurses and aides. Among the few words he can say are the names of his closest helpers, like his aide Heather and speech therapist Lauren, whom he calls LaLa. Ms. Reyer’s mother, Evelyn, who recently turned 96, also lives at the nursing facility now.
When Brendan House finally held its grand opening in May, Michael and Ms. Reyer weren’t there. Instead, they’re now focused on building a home that can accommodate Michael. Ms. Reyer, who lives with her sister in Ridge, said she’s optimistic that when the litigation against Bed Bath & Beyond, the sellers of the gel candle, concludes at some point, they’ll have the resources to build a house that has a saltwater pool — a necessity for burn victims — and a Hoyer lift that can be used to move Michael in and out of a wheelchair.
Litigation has been ongoing since shortly after the accident.
Michael remains in good spirits and his health has held up as well as Ms. Reyer could have hoped. Aside from one pneumonia scare, he’s suffered little else in terms of illness. The seizures doctors predicted would plague him have never materialized. He sleeps well most nights and is prescribed limited medication.
Ms. Reyer recently bought a small Yorkie named Marley that she brings most days to see Michael. The 6-month-old puppy rests on a bed on Michael’s wheelchair and will cuddle on his shoulder. The dog has been a blessing not only to Michael, but his mother as well.
“She’s been good therapy for me,” she said.
Michael’s days are spent on speech therapy and physical therapy. Three days a week, he’s placed in leg braces that allow him to stand. He recently set a record, standing for nearly nine minutes, his mother said.
As the years pass, his visitors have dwindled down to mostly just family members. His mom visits him every day. Last year she went on a cruise for six days, the first extended break she had away from Michael since the accident.
She takes him outside some days and they’ll walk to CVS or Target. They listen for the sounds of motorcycles and birds. Drivers cruising past honk their horns.
There are milestones, however small, that Ms. Reyer takes pride in. When Michael had his teeth cleaned last year, he underwent anesthesia. At his last cleaning at Stony Brook University School of Dental Medicine, which has a section for people with disabilities, Michael had his mouth clamped open and did not require anesthesia — a small victory.
Ms. Reyer says she hasn’t give up hope that Michael can advance even further one day. Stem cell research provides a glimmer of hope. Her goal is for Michael to talk, even basic expressions like ‘“Can you change me?”
“Right, Mike,” she says to him. “That would make mommy happy.”
Photo caption: Michael Hubbard pictured with his mother Nancy Reyer last Friday at the skilled nursing facility at Peconic Bay Medical Center. (Credit: Joe Werkmeister)
The author is the editor of the Riverhead News-Review and The Suffolk Times. He can be reached at 631-354-8049 or [email protected].