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Lisa Szilagyi: Her Daughter With Special Needs Showed Her The Way

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Lisa Szilagyi discovered her daughter, Emily, now 23, suffered from a genetic disorder 48 hours before she was born.
Lisa Szilagyi discovered her daughter, Emily, now 23, suffered from a genetic disorder 48 hours before she was born.

There are some moments in life that simply alter the river's course. For Lisa Szilagyi, 54, that moment came 23 years ago. Forty-eight hours before her first-born was to be delivered by C-section, the doctors detected abnormalities with the fetus. The news was jolting and devastating: Her precious unborn baby girl had a genetic defect known as tuberous sclerosis complex.

At first the doctors thought baby Emily wouldn't survive childbirth, and then if she did, she would immediately need open heart surgery. At best, the doctors said, she would live just a few years -- years marked with mental retardation, medical issues and more tumors than the ones that encapsulated much of her tiny in-vitro heart.

But Emily had other plans. She just turned 23 last month and while her life has certainly had its share of surgeries, seizures and obstacles, she's a happy young woman with a mother who has dedicated herself not just to Emily's care, but also to improving the lives of children and young adults with severe disabilities.

Szilagyi sees her daughter's birth as the impetus for her to "get on the track I was meant to get on." While her life as a Hollywood film distributor took her to places like Cannes and Milan, "it was always just a job," she said. "I never felt any passion about it.

"I'm in the place I was meant to be in," Szilagyi said. "Because of Emily and the profound change that having a child with a disability has brought about in our lives, I have found what I was meant to do with my life."

In the months after Emily's birth, Szilagyi left her Hollywood job and immersed herself in the world of families who have kids with special needs. She got involved with the Tuberous Sclerosis Alliance -- the national foundation for Emily's specific genetic problem -- and counseled families whose children were newly diagnosed. She attended national conferences to educate herself about her daughter's condition and positioned herself to be among the first to hear about new treatments and research. She and her husband grappled with not just Emily's health issues, but also with how to get her health care covered by insurance. On more than one occasion, her husband switched jobs based on the quality of the medical insurance it provided.

In those early years after Emily's birth, Szilagyi first took a job as a special education aide; her assignment was to be a one-on-one aide to a sixth-grade girl, shadowing her all day through her classes and helping her navigate the school's social web. Watching how that child interacted with the general ed population planted a seed with Szilagyi, who years later helped form the Hand-in-Hand program at the Malibu Jewish Center & Synagogue, where challenged and mainstream kids pair up for activities together, forming friendships.

"Too often," Szilagyi said, "people can't see the person behind the disability." The Hand-in-Hand program strips away differences -- it just becomes a room full of kids singing, dancing and making cupcakes. When it came time to plant a community garden, the mainstream kids were confronted with the realities that faced one of their physically challenged peers: How would the boy get his wheelchair up the steep embankment? The kids engineered and built him a ramp -- a kind of "No Child Left Behind" gesture of their own.

Szilagyi went back to school for certification and now teaches a life skills class for moderately and severely challenged high schoolers. She takes her students on outings into the community, like to the local supermarket where they learn how to grocery shop and handle the checkout counter. She also teaches them how to do laundry, make phone calls and manage for themselves as best they can.

Szilagyi said she has come to appreciate each day with Emily as a gift to be treasured.

"My husband and I went through a profound change," she said. "We learned to see life differently. It became less important for us to argue about the little things. Instead we save our emotional strength to deal with the issues involving Emily."

"Emily's birth was a life-changing event," said Szilagyi. "We were not the first people who ever went through this. But it is a shock." Szilagyi describes Emily's first-year "book of milestones" like this: "We wrote down when we went a month without seeing the cardiologist, or three months without seeing the neurologist."

And then, when Emily was 3, Lisa got pregnant again.

"Yes," said Szilagyi, "we had a second child -- something families with severely challenged first-borns don't generally do." They were in the process of getting multiple medical opinions about the likelihood of having another baby with a genetic problem when Lisa got pregnant. "We knew that we would take whatever God gave us, so that stopped the genetic testing."

Szilagyi says having the experience of parenting a healthy child is one she is glad she didn't miss out on having. "When you're in the world of special-needs kids, you don't know what the rest of world feels like," she said. She acknowledged that her son Jake's childhood was "definitely impacted" by having a sister with special needs. "He was always going to therapies for Emily. He saw her have strong seizures. He'd wake up and I would be gone -- rushing Emily to the emergency room in the middle of the night," Szilagyi said. "He experienced a lot." Jake is off at college now and, Szilagyi said, missed terribly by Emily.

The one area that concerns Szilagyi the most is the future -- a place she calls a special ed parent's "greatest fear." Emily needs 24/7 care. She can walk with assistance, but is prone to seizures and spends time in her wheelchair for safety reasons. Although she was making cognitive developmental milestones in her toddler years, subsequent tumors on her brain have left her non-verbal. She is an expressive young woman and those who know her can easily interpret her moods and wants from her facial expressions.

Szilagyi's current project is to establish an adult day care center where Emily can go, socialize and be watched over.

"I have to think about what happens when I'm not here or able to take care of her," Szilagyi says. "All I want for my daughter is to be safe and to be happy."

But, she added, "I believe the universe works in mysterious ways. And Emily came into my life for a reason."

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