It’s still dark outside when Jane Hart begins her day. She takes care of the dog, showers, eats breakfast, and cleans the kitchen. Jane and her husband, Kevin, get their daughter Grayson ready for the day. They change her diaper and her clothes, brush her teeth, wash her face, fix her hair, and load her into the van to drive her to school.
Jane’s day sounds pretty normal until you learn that Grayson is 20 years old and has STXBP1 encephalopathy with epilepsy, a rare genetic disorder that effects brain function and the development of speech and movement.
And she wasn’t expected to live beyond her first birthday.
Jane had felt the weight of trying to be perfect for most of her life, but the day she found out she was pregnant — at twenty-one and unmarried — the weight became almost unbearable. Feelings of failure had often followed Jane, and now this. She feared her parents’s reaction; they were shocked, and she knew her father, a pastor, worried about what the congregation thought.
And when Jane refused to get an abortion, her boyfriend distanced himself. Jane was alone and scared.
Grayson was born in 1997, the week before Thanksgiving, with no complications. But two days later, Jane notice Grayson strangely twitching. The baby girl twitched more and more, but doctors convinced Jane it was newborn reflexes. At four weeks old, Grayson had another severe episode of twitching. Jane believed it was more than newborn reflexes. She sought answers at the doctor’s office, but EEG and CAT scans came back normal.
Almost three weeks later, Grayson ran a high fever. Jane took her back to the same pediatric group, but she saw a different doctor who hospitalized Grayson and requested a neurological consult after Jane laid out Grayson’s history. The neurologist quickly assessed Grayson’s movements, and after examining her EEG, confirmed Jane’s suspicions that Grayson’s brain was completely abnormal.
Grayson was having epileptic seizures as a result of myoclonic encephalopathy. The doctor told Jane her baby would not live longer than a year.
“My world came crashing down,” said Jane. “And my life would be forever changed.”
Grayson needs lots of assistance, but Jane says Grayson’s diagnosis was a turning point in Jane’s life.
“Something just clicked in me to be her fighter, and I have never looked back. God has changed me.”
Changed for Good
Jane met Kevin when Grayson was 11 months old; they married and had their daughter Kloie.
Twenty years later, Jane and Kevin work together to care for their family, and it’s not always easy.
Before Jane does anything for herself in the morning, she measures, crushes and dissolves Grayson’s medicine for the syringe and writes in Grayson’s school notebook — the one that lets her classroom staff know how the evening and night went. These things aren’t what most parents plan for when they welcome a new son or daughter. And for Jane and her family, nearly everything about the journey with a special needs child has been extremely difficult, from finding the right church to finding wheelchair-friendly parks.
Sometimes Jane substitute teaches at Grayson’s school, which is physically and emotionally demanding on top of what some consider to be a challenging life. But it opens up opportunities to serve those with special needs and also provides some social interaction, which can be hard to come by when so much time is spent parenting a person with special needs.
Sure, her life is messy, Jane says. But it’s blessed, too. She’s an advocate for her daughter and for many others with special needs.
Jane is passionate about being a voice for those who don’t have one. And that just because a person may have different needs and abilities doesn’t mean there’s nothing for them to do.
“One of the most important things I want the world to know is that everyone has a purpose,” she says.
And we agree.
Every story has a purpose. Every story matters. Jane’s, Grayson’s and yours, too.