07/19/2024

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When Isla was about 16 months old, it became clear she was going through some global delays. She didn’t have two seizures until she was 3 years old. When we first went to the hospital, the doctor said it was a febrile seizure, and she did not have epilepsy.

About three months later, we woke up in the morning and Isla was in a [prolonged] seizure. We have no way of knowing how long the seizures lasted, but she was eventually intubated in the intensive care unit and suffered brain damage from the seizures. She probably has some form of epilepsy that we could have managed better, but when you have a seizure for such a long time, it burns pathways into the brain.

[Her neurologist said] Because of the type and frequency of Isla’s seizures, she was at risk for SUDEP, the sudden and unexpected death of a person with epilepsy. This is very distressing information.

Hospitals are our lifelines, so whenever our family goes anywhere, even for a day trip, it’s like, “How close are we to the hospital?” They don’t feel safe right now because the pandemic has started. If we had to go to the hospital, she would be at risk of contracting the coronavirus, which is very scary for Isra because she is so weak.

We talked to our neurologist on the phone and came up with a plan for how long we could keep her at home if she had a seizure and made sure we had a three-month supply of medication, [but] at some point you Realize that you have no control. This is a very difficult thing for most of us. We live our lives with a certain degree of surrender.

Typically, girls are diagnosed with autism longer than boys. When Isla was diagnosed with autism, life was turned upside down because suddenly we had a better understanding of her experience in the world. For so long, we’ve just been floating around, not really knowing the best way to support her.

Before the pandemic, Isra received extensive outside support and 16 hours of treatment at home. The reality is that we cannot replace all of these therapies. We’ve set some boundaries on how much our family can do. She’s doing some teletherapy, but it’s hard for her to spend half an hour on the computer at a time.

One thing I don’t want to do is exacerbate an already tense situation. We’re trying to really pay attention to their emotional health in this area and know the school will be there when this is over. We just wanted to make the most of our time together because we may never be together again in this way.

We sing and do silly things 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 a year ago, and when the quarantine started, I posted it again and I just wrote, “I think we all deserve this again.”

[Posts], in the space of a week, just started to explode. TLC’s Chilli wrote a message saying she loved it, and even Janet Jackson shared it. People send me messages about how much they love Lu’s videos, but some people have seen our page and sent very loving messages to our whole family. In the middle of it all, it’s just a love spotlight.

Part of being able to find joy and get into a space that feels very positive is allowing yourself to have grief. I have never denied Ella Medical’s fragile grief. Now I think we’re all facing the possibility of losing someone we love so much, so that forces us to really hold on to each other and really be with the people we’re grateful for and the ones we love and express our love to them.

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