Seth Hyman: Life and Death
To Seth Hyman, funding for children’s services is not just a matter of public policy. It’s a matter of life and death.
Hyman, of Broward County, is the father of a severely disabled, medically complex and very fragile little girl. “Becca is non-verbal, can’t walk, can’t sit. She is completely dependent on us 24 hours a day,” Hyman rattles off, in a matter-of-fact tone of someone who is quite accustomed to reciting an inventory of his child’s afflictions. “She is fed through a feeding tube and has to be watched around the clock because her life is always at stake.” If that’s not enough, Becca has as many as 200 to 300 seizures daily. Often these episodes require the assistance of emergency medical personnel.
Making sure Becca gets the help she needs has been more than a full-time job for Hyman and his wife, Danielle.
Almost since Becca was born, they knew something was very wrong. She wasn’t developing properly and would turn blue when she was fed. She had her first surgery when she was 4½ months old, but that didn’t solve the problem. After countless gut-wrenching hospital visits, the Hymans took her to Massachusetts General Hospital, where Harvard doctors began unraveling the mystery. Becca has a genetic disorder called 1p36 Deletion Syndrome, which causes developmental delays, mental and physical impairment, and other severe medical conditions. She will most likely never live a normal life.
People generally look away when confronted with a child with special needs. Perhaps that’s natural; we’re taught as children not to stare. But now Seth is worried policy-makers are looking away, too. Politics and tight budgets are making it more difficult for families to get needed services, or to hang onto the services they do have.
In particular, Hyman is worried about the trend he sees toward cuts in subsidized home nursing assistance, which makes it easier for children like Becca to live at home with their families. Florida already has a less than stellar track record for medical services and he is concerned about what he sees as a growing trend in Florida to fill empty beds in geriatric facilities with medically complex children. Those who benefit in that situation are the powerful nursing home industry, not the children. Many parents oppose the move, but they feel powerless to fight it, he says.
“The way they are making this happen is to implement cutbacks in critical home nursing and other services. In turn, this means more children would end up institutionalized, literally putting their lives at risk,” Hyman explains.
Hyman fiercely believes no one can care for a medically fragile child better than a parent or loving caregiver, and he points to Becca as proof.
“Do you know what it’s like to wake up every morning and wonder if your child is alive? That’s what families like ours face every day,” Hyman says. “Most people have no idea what a family goes through when raising a special needs child or a child who is medically complex. Until Rebecca, I didn’t have any idea either.”
Hyman strongly supports the Children’s Movement of Florida’s position that more money should be invested in early screening for children and better resources for parents who suspect something is wrong with their child but don’t know where to turn. He shudders to think of all the months he and his wife struggled blindly to find out what was wrong with Rebecca. “We are so grateful that the Children’s Movement of Florida is bringing awareness to the issues of raising special needs children,” he says.
At this point, however, Hyman is beyond hoping that services will be expanded in Florida. Earlier this year, as Co-Chair of the Broward Days Special Needs Advisory Issue Team, he traveled to Tallahassee to beseech lawmakers just to preserve existing programs. “These services should never be cut. You can’t get these years back,” he says. “The first years of life are critical. If you screen children early enough, diagnose and treat them, you can make a big difference in the quality of life of that child and in the life of that family.”
Despite all the pressures on his family, he continues to advocate for other parents of children in situations similar to his. He feels he has no choice. He only wishes he could do more.
“When a family has a child with special needs, they are so wrapped up in providing constant care for their child they barely have time to go to the grocery store,” he says. “They would love to go to meetings and serve on committees. They would love to speak up and advocate for children like theirs, but they just can’t. Every day is a struggle to survive.”
That means the interests of insurance companies and medical institutions are often heard much more loudly and clearly that the voices of parents, he says.
He just wishes more people understood the difficult path families like his travel, and how critical it is to preserve services — not to mention expand them. In all the belt-tightening talk in Tallahassee and clamor for lower taxes, Hyman says people often don’t realize children like Rebecca pay the price.
“Before we had Rebecca, I never realized there’s a whole world of people out there that face what we face every day,” Hyman says.
“Sometimes we’ll go out, and my wife will look at other families and see how healthy and happy they are. Then she’ll look at me,” he says. They don’t need words at that point. While the Hymans don’t begrudge the happiness of those families, “We just want them understand and be compassionate to situations like ours.
“Those families, they have no idea,” Hyman says. “That’s not their fault. Until Rebecca, I didn’t have any idea either.
“Those politicians and lawmakers who are quick to make decisions on issues that affect our children, they often also have no idea. They don’t live and breathe our struggles daily. They, especially, should have compassion. We are counting on them to do the right thing.”