Gilroy mother Elena Desatoff kneeled over her 12-year-old son David Jr.’s makeshift mattress on his bedroom floor on a recent weekday morning, massaging his calves with essential oils while softly cooing “good morning.”
David laughed and stretched as he awoke, attempting to lift his feeble neck.
His identical twin, Jonathan, laid on a floor mat next to David and groaned as his grandmother stretched his hamstrings. Working swiftly, Elena, 42, changed each boy’s diaper as they giggled to the friendly tune of a pirate cartoon on a tiny television screen above them.
After the twins received a half-hour body massage, their father, David, 43, lifted each boy off the floor and strapped them into wheelchairs stationed near the kitchen.
So begins the intricate morning routine for the Desatoffs, a family whose world revolves around muscle therapy, wheelchairs, supplements and late-night tantrums from David Jr. and Jonathan. It’s an all-too familiar regime for anyone who cares for another person suffering from cerebral palsy.
While most mothers with teen boys spend their weekday mornings nagging their sons to brush their teeth, rinse their breakfast dishes or get out the door on time, mornings for Elena and her husband David are spent spoon-feeding their sons, brushing their teeth, massaging their tight as-rubber-band muscles and singing to them – all the while praying that neither boy has an outburst or a seizure.
“Whenever I see someone in a wheelchair, I always wonder ‘what is their story?’ Because I know ours, and it’s hard,” Elena said from the porch of her trailer on the northern outskirts of Gilroy on Ferguson Road.
A little kindness from the community this holiday season went a long way for the Desatoffs, when a San Jose contractor offered to build a wheelchair-friendly ramp that now provides handicap access from their driveway to their front porch.
The Desatoffs, whose income is limited due to the mountains of medical treatments the boys require, had struggled with getting the twins down the steps to their driveway since moving to Gilroy two years ago.
Their part-time caregiver, San Jose respite worker Celia Goodwin, 47, and her 19-year-old son Tommy observed the family’s plight. The two decided to secretly reach out in October to contractors all over the community in hopes someone would step up and donate their time to build a ramp and make the twin’s home more accessible.
Barry Schwartz of Schwartz construction called Goodwin within 24 hours of receiving her email.
“(Barry) couldn’t tell over the phone, but I was doing a happy dance when he called,” Goodwin said, demonstrating her dance moves. “I danced all over the place.”
Schwartz completed the ramp in a matter of days after beginning the project Oct. 22.
On a late November afternoon, Elena and Goodwin admired their new ramp.
“Every time I open the door my heart gets warm seeing this (ramp),” Elena said, motioning to the freshly built wooden ramp.
When Schwartz drove down to Gilroy with a helper over the course of two days in November to build the ramp, he recalls the twins arriving home from school that first day in an emotional rampage.
“Their father took them inside and changed their diapers, but they were just so unhappy. It broke my heart,” Schwartz said. “I got three good kids, one daughter got hit by a car and God bless her she turned out OK, but my wife and I knew how lucky we were. My heart goes out to this family and their situation.”
In an attempt to explain what prompts her sons to exhibit sudden fits and outbursts, Elena paints a theoretical picture: If the twins have an itch, they cannot scratch it on their own. If they have a pain, they cannot use words to tell someone what hurts. They need someone constantly helping them do things that most people do on their own.
“This is our life,” she resolved, carefully brushing Jonathan’s teeth.
It’s not a life that Elena and David could have ever imagined 13 years ago when they first learned they were expecting twins.
Six months into a normal, healthy pregnancy, the first-time mother went into early labor.
She delivered two baby boys that together weighed less than four pounds, even though doctors gave Elena medicine to stop the contractions.
“Their lungs were as thin as tissue paper. The doctors weren’t sure if they would make it,” Elena said, her eyes moistening.
Because of their delicate lungs, the babies were unable to get a healthy supply of oxygen to their brain, causing a cerebral disorder to set in early.
Two months later, doctors told Elena and David that the boys would suffer from mental disabilities for the rest of their lives.
About one year after that, the family got the news they had been dreading: Their babies had severe cerebral palsy.
But in the face of all odds, the boys have improved their communication and motor skills in strides the doctors never anticipated. The twins can swallow food, clap their hands, attend public school in San Jose, smile and even use simple phrases at times.
“School! School!” Jonathan exclaimed at the breakfast counter, smiling and widening his blue eyes.
“You love to go to school, don’t you?” Elena said, taking a comb to his silky short brown hair.
David and Elena get by with the support of David’s retired parents, who often visit to help with the boys for extended periods of time. Goodwin – who comes to the house two afternoons a week – is also of great help.
“It’s like caring for two newborns,” Elena said. “I’m so grateful that family is so supportive – otherwise, I just don’t know.”
David, a field inspector for insurance companies, has a flexible work schedule and is able to pitch in with the boys in the morning and drive them to school in San Jose before going to work.
On a recent afternoon, David took David Jr. to a small trampoline in their living room. Holding David Jr.’s body close to his, the father bounced with his giggling son. The activity serves as bonding time between the two, and also helps to loosen and strengthen the boys’ muscles.
“Good job, David!” Elena shouted over the creaking trampoline.
Goodwin, who wants to someday start a foundation for local children living with cerebral palsy, has become an advocate for the Desatoff family in the community.
“The (Desatoff) family is strong beyond words,” Goodwin said. “I want to do what I can to help them and their situation.”
Elena and Goodwin said one way people can help is to simply be friendly to the boys in public.
“You’d be amazed at how many people either just stare or try not to look at us at all,” Elena said. “We’re nice people, and the twins aren’t contagious. Come up to us, ask questions. We’ll answer them. We won’t be offended.”
To contact the Desatoff family, email Celia Goodwin at [email protected].
