Noelle Gentile is a New York artist, director, educator and mother of two daughters, Isla, 8, and Lucia, 5. After Isla was diagnosed with epilepsy and autism, Gentile wrote a children's book about her family to help foster inclusion and celebrate diverse abilities. This is the story of how their family is coping during the pandemic, which has been edited for brevity, as told to Yahoo Life by Gentile. Follow her journey on Instagram.
When Isla was about 16 months old, it became clear that she was experiencing some global delays. It wasn't until she was 3 years old that she had two seizures. Initially when we went to the hospital, the doctor said that they were febrile seizures and that she did not have epilepsy.
About three months later, we woke up in the morning and Isla was in the middle of a [prolonged] seizure. There's no way for us to know how long that seizure went on, but she wound up intubated in the ICU and she has brain damage as a result of that seizure. She may have had a form of epilepsy that we would have been able to control a little bit better, but when you have a seizure that's that prolonged, it burns pathways into the brain.
[Her neurologist said] that because of the type of seizures Isla was having and the frequency of them, she was at 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 anytime our family goes anywhere, even for a day trip, 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 for Isla because of her medical fragility.
We talked with our neurologist on the phone and sort of came up with a plan of how long we could keep her home if she had a seizure, and made sure that we had three months supply of meds, [but] at a certain point you realize you're not in control. And that's a really hard thing for most of us. We live our life with a certain amount of surrender.
Oftentimes girls go undiagnosed with an autism diagnosis for longer than boys. When Isla received her autism diagnosis, it was life changing because all of a sudden we had a better understanding of her experience in the world. For so long we were just sort of floating around not really knowing the best ways to support her.
Before the pandemic, Isla was receiving a lot of outside support and 16 hours of therapy at home. The reality is we can't replace all of those therapies. We've put some boundaries around how much our family can do. She is doing some tele-therapy, but it's hard for her to spend half an hour at a time on a computer.
One of the things that I don't want to do is exacerbate what is already a stressful situation. We're trying to be really mindful of their emotional wellbeing in this and knowing that school will be there when this is over. We’re just trying to make the most of time together because we probably will never be together in this way again.
We sing and act silly a lot at home, and music is a big part of our family time. The video of my youngest daughter Lucia singing “No Scrubs” was from a year ago, and when the quarantine started, I posted it again and I just wrote, “I feel like we all deserve this again.”
[The post], over a one-week period, just started to explode. Chilli from TLC wrote a message saying she loved it, and even Janet Jackson shared it. People were messaging me about how much they loved Lu’s video, but some people had looked at our page and had really loving messages to our whole family. It was just such a bright spot of love in the middle of all this.
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. I have never denied the grief around Isla’s medical fragility. Right now I think we’re all collectively facing potential of losing people that we love dearly, and so it's forcing us to really hold tight to each other and be really present with what we're thankful for and who we love and expressing our love to them.
Find out more about medical fragility and family bonds in Noelle Gentile’s book Isla & Lulu.
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