TOMS RIVER, N.J. – A look of disbelief slowly grew on Zoe Marziano’s face last week when the staff at Children’s Specialized Hospital said her parents would finally be allowed to visit her inside the long-term care home for young people with disabilities.
It had been 137 days since they last parted with a hug and a kiss on March 8. Zoe’s facility would be locked down less than a week later to stem the spread of COVID-19.
But there they were Thursday, Kimberly and Fred Marziano – Mom and Dad – walking through the doors of the Toms River, New Jersey, facility and toward Zoe, who waited in her wheelchair.
“When she saw us walk through the door her eyes were big as saucers and she wasn’t sure she could believe what she was seeing,” Kimberly said. “When she was confident it was us and that we were real and right there with her, her face broke into the biggest smile.”
The Marzianos’ long-awaited reunion was the culmination of a policy change by Gov. Phil Murphy’s administration after a USA TODAY Network New Jersey story this month documented Zoe’s struggles with isolation.
The lockdown affected almost 200 children who, through birth, disease or trauma, have disabilities so severe that they need around-the-clock care.
Unlike nursing homes for the elderly, where 6,700 residents have died from COVID-19 despite the lockdown, there have been no deaths at the four pediatric long-term care facilities in New Jersey. Only four children have been infected.
Given the successful infection prevention at these facilities, parents like the Marzianos began pushing for a more lenient visitation policy to help curb the emotional stress of their children.
Zoe is partially paralyzed, cannot speak, cannot see well and has recurring seizures after a virus caused severe brain damage when she was 2. Still, she has been able to live a full life, going to school each day and spending weekends with her parents and her beloved dog, Phoebe, at their home.
But the pandemic quickly changed that.
Zoe’s school day was reduced from six hours offsite to less than an hour online in her bedroom. She had to eat her meals by herself with an aide behind a curtain that encircled her bed, instead of in the dining room. All outings ceased.
In-person visits were replaced by video conferences – where Zoe used a computer to say “I miss you” and “I love you” and “I want to hug you” repeatedly to her parents.
Window and socially distant visits confused Zoe, who didn’t understand why her parents did not embrace her.
While the governor’s policy change to allow face-to-face visits in pediatric facilities was welcomed, Kimberly called the move a first step towards normalizing the children’s lives. She hopes the children will be allowed outside their facility for trips and for visits home, to experience life much as any other child can right now in New Jersey.
Gov. Murphy’s policy doesn’t address “the fundamental problem of punishing children who are not sick by forcing them to live in isolation, unable to enjoy the same rights as all other New Jersey residents,” Kimberly said.
Still, the Marzianos will take full advantage of the new policy, with two 30-minute visits a week.
Thursday was a reunion that Kimberly and Fred will remember for a long time.
“That smile never left her face the whole 30 minutes we were allowed to spend with her,” Kimberly said.
Follow reporter Scott Fallon on Twitter: @newsfallon
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