Mother of a child with epilepsy on how her family is coping with the pandemic: ‘We live our life with a certain amount of surrender’
Noelle Gentile is an artist, director, and educator from New York who recently wrote a children's book about her two daughters, Isla (8) and Lucia (5), to help foster inclusion and celebrate diverse abilities after Isla was diagnosed with epilepsy and autism. The family has always lived their lives with a certain amount of surrender given Isla's medical fragility. Hospitals used to be a safe space but now it's a place to be avoided at all costs. Gentile offers a positive perspective on coping with life during the pandemic and finding the joy whenever possible.
Video Transcript
NOELLE GENTILE: When we go to bed at night, and I hug her, or I kiss her good night, and I think, I hope I hear her little voice in the morning. I hope I get to see her smile again. When you live that close to that, you just, like, really force yourself into the moment, take in as much joy and as much love as I can.
[MUSIC PLAYING]
I have two daughters. My oldest daughter is Isla, and my youngest daughter is Lucia. When Isla was about three years old, she had two seizures. She has brain damage as a result of that seizure, because it was so long. When you have a seizure that's that prolonged, it burns pathways into the brain.
When we went to see her neurologist, he said, that because of the type of seizures Isla was having and the frequency of them, that she was at risk for SUDEP, which is Sudden Unexpected Death in a Person with Epilepsy. That was very traumatizing information to hear.
Hospitals are our lifeline. And so any time our family goes anywhere, it's like, how close are we in proximity to a hospital? Since the pandemic has begun, they don't feel safe right now. If we have to go to the hospital, she'll be at risk of being exposed to COVID, which would be very scary, because of her medical fragility. We've got to figure out the medicine. And we've got to figure out, like, OK, get the plan with the doctor and all of that stuff. But then at a certain point, you realize you're not in control.
[MUSIC PLAYING]
Isla was receiving 16 hours of therapy at home. And then at school, she receives speech PT, OT. She works with a social worker. The reality is we can't replace all of those therapies. We've just put some boundaries around how much our family can do. We are doing some school stuff, but we're also doing what feels natural to us and what feels good to Isla right now.
[MUSIC PLAYING]
- (SINGING) [INAUDIBLE]
NOELLE GENTILE: We sing a lot at home. The video of Lulu singing "No Scrubs" was from a year ago. And when the quarantine started, I posted it again.
- I don't want no scrubs. Scrubs is a guy. Get no love from me.
NOELLE GENTILE: And then, over a week period, it just started to, like, explode. And I was like, oh my gosh, this has close to a million views. People were messaging me, and we're really loving messages to our family. And it was just, like, a really nice distraction for a while.
- Coronavirus time. Hasn't it been so stinky? Yeah, it has.
NOELLE GENTILE: Part of being able to find a joy and move into a space that feels really positive is to allow yourself to have the grief. Sometimes, living in the space of fearing losing her, it's like, what are the small things all over the place that I'm thankful for? And focusing on those things.
- Hi, Lucia.
- Hi, Isla.
[MUSIC PLAYING]
