SEARCY, Ark. – For many families that live with a four-year-old, your day may go something like this.

You woke up early, played around with loud toys on the floor, and maybe opened cabinet doors just to hear them slam a couple times.

It’s similar in the Heath household in Searcy. 

Curiosity is not a quality four-year-old Gibby Heath lacks. He’s up early, already listened to music books, and slammed the pantry doors once or twice.

For mom Sydney, when she sees her boy smile and giggle, she does the same, because she knows it’s a day that could have never been.

“Day one, he was born prematurely, two pounds almost four years ago,” she explains. 

Gibby was born with brain and lung damage, and now he has several chronic conditions.

Sydney says he was diagnosed with Lennox-Gastaut Syndrome, a rare and severe kind of epilepsy that starts in childhood.

Her son now suffers from epilepsy, going through about 20 seizures each day.

“Because of that we’ve spent the vast majority of the last four years in the hospital, it’s like we live here,” she says.

Arkansas Children’s Hospital is their home away from home. It’s where they ended up just a few weeks later.

“This was the life we were born into, hospital life,” she says.

But playtime doesn’t stop just because this growing boy is in a hospital bed.

The ABC song is still sung, and book, continues to ring out in the room.

But life for Sydney, it comes to a halt.

“There is no work as a chronic special needs parent of someone with a chronic disease because your availability and flexibility is so minimal,” she continues.

She’s in the hospital room now, and each time Gibby comes back to ACH. Which means when she doesn’t have time to interview for a job, she said she is turned away, because employers fear she’ll always have to leave work.

“It’s very difficult on you personality, you don’t feel like you’re worth anything at all not even a gas station job,” she adds.

While she knows she could find a caregiver to be with Gibby while she were to work, she wants to be by his side.

Karen Craig with Easter Seals Arkansas said Sydney isn’t alone, and parents, are crucial to the healing of kids with chronic diseases.

Craig says “They can help advocate for the child. They can participate in caregiving if the child is in the hospital and carry it out at home.”

While a Medicaid waiver, which helps kids with disabilities in Arkansas receive services like living services and care coordination, it’s only available to a limited number of people, and distributed in a lottery form.

Craig said there is always room for improvement within the state to help parents, but mainly education is crucial. To teach parents how to navigate this system and what to do.

It’s what Sydney is trying to do for Gibby and give him all the care and tools to give him the best quality of life.

Now out of the hospital, the learning and playing continues on the floor, and Sydney hopes for a job and hopes for the best for her son.

“Life is too short to not be positive, that’s what gets me through it. If he can go through this and still remain happy then why can’t I?”