Hopeful and Honest

Annette Hines’ daughter Elizabeth was born in 1996 at 29 weeks and just 2 pounds. It’s the kind of premature delivery that turns parents into medical students overnight, and it gave Hines an indication of what the future had in store for her family. The three months spent in the NICU and the hours of waiting in hospital hallways were difficult, but it was the seizures that ultimately signaled a bigger problem.

Two years after Elizabeth’s birth, doctors told Hines that her daughter’s frequent seizures meant she had Leigh’s disease, a rare degenerative disorder that attacks the mitochondria in a body’s cells. Her life would be brief and exceptionally challenging. She would never walk. Never speak. Never see more than light and shape. 

Hines is remarkably candid in recalling not only the challenges she and Elizabeth faced together, but also the many joys her daughter inspired and experienced, particularly during the eight years she attended the Perkins School for the Blind, where she engaged with friends and teachers and helped deliver flowers from a campus greenhouse.

“That was her Disney World,” says Hines. “She loved school, she loved her friends. She loved her teachers, she loved music. She was just the happiest of kids despite being in pain all the time. She had to face so much that a grown adult probably would’ve been knocked over by, but that was her life and that’s all she knew, and she took it all in stride. Her life was hard, yes, but it was full.”

We need a movement, a community, a shared knowledge base. That’s where we’ll find strength.

Hines had grown up as a poor kid from East Boston, raised by a single mother who took occasional administrative jobs. They lived on welfare and, as Hines recalls with a laugh, “government cheese.” But she was smart, tagged as “exceptional” in public school, and pushed into the college-prep pipeline.

“College was not even a concept,” she says. “I had to figure all of that out myself.”

A battle with cancer disrupted her senior year, but she earned her GED at 17, then went to community college at night. Despite a dyslexia diagnosis, she eventually earned a bachelor’s degree while holding down jobs at banks and financial firms. By 27, she had a law degree from Howard University and a baby on the way. 

“I did everything in the right order,” she says. “Got married, graduated, and then immediately got pregnant. I’m a strict rule follower, and I’ve never met a checklist I didn’t love.” 

But Elizabeth’s birth rerouted everything. Hines’ life turned into something like trench warfare: fighting for home nurses, therapies, insurance claims and equipment—every breath of care a negotiation.

“It was a shit show—and you can quote me on that,” she says with a laugh.

When it became clear she couldn’t get adequate, affordable home care, Hines 

did something that had become a theme in her life: She built it herself. “I started a nursing agency. I had no idea what I was doing,” she says. “I just knew my daughter’s life depended on it.” She secured a grant, merged with another nonprofit, and launched an operation that still exists today.

Along the way, her first marriage ended. “He couldn’t stay the course,” she says. Alone with two daughters—Elizabeth and her younger sister, Caroline—Hines kept going, running a general estate planning law practice in downtown Natick by day, caregiving by night. Sometimes Hines was up three or four nights a week caring for Elizabeth while the rest of the world slept. And sometimes, when child care support fell through, Caroline would sleep on hospital couches beside her mother and sister.

“It was tough for Caroline,” says Hines. “She was always on high alert because things were always going wrong.”

After a few tough years, things were unraveling. “I filed for bankruptcy three weeks before Elizabeth died,” Hines says. “I was a working lawyer. I was still showing up. But nobody would hire me full time. Not really. They liked my story, not the reality. I was the poster child they didn’t want to deal with.”

Then, at 17, Elizabeth died, and everything stopped.

“The house went quiet,” Hines says. “The nurses, the therapists, the appointments—all gone. The grief was one thing, but the silence was another. I didn’t know who I was without her.”

Boston Children’s Hospital invited Hines to a grief group. It helped. Hines wrote in a journal, too, which eventually became a book in 2019: Butterflies and Second Chances. It chronicles her experience raising Elizabeth and contains a wide array of practical advice on everything from navigating insurance to becoming a strong self-advocate. “It’s not a happy book,” she says. “But it’s hopeful. And it’s honest.”

That honesty powers everything she does now. Hines transformed her firm into Special Needs Law Group, where she helps families like hers in areas like estate planning, public benefits navigation, special needs trusts and estate administration. She launched a podcast and YouTube channel, Parenting Impossible, and developed online training programs for caregivers, educators and professionals. “One-on-one, we’re not strong,” she says. “We need a movement, a community, a shared knowledge base. That’s where we’ll find strength.”

Today, Hines is remarried—her husband, Mark Worthington, is a nationally respected estate planning attorney who walked into the chaos weeks before Elizabeth passed. “Why anyone would sign up for that, I don’t know,” she says. “But he did. And he stayed. And he’s amazing.”

Together, they continue to support families navigating the labyrinth of care and law and loneliness that define disability life in America. “I’m not trying to run the world,” Hines says. “I just want to make a difference in my little corner of it.”