By Noelle Gentile and Edited by Jennifer Bartels
I woke to the morning light. The kind of light that told me the girls had let us sleep in, which is a rare event in a house with two small children. I opened my eyes and our baby Lucia’s face was smiling into mine. I lay there for a couple of minutes thinking, ‘Isla must be really tired; she never sleeps this late. Her 3 and a half year old body usually leaps up with the sun.’ Just as the thought was drifting through my mind, Nate woke up and went to Isla’s room.
And then I heard it: “Oh no, no. She’s having another seizure.”
The emergency room was like the transient spaces in dreams. Long passages stretched into a maze and random objects, out of place, littered the hallway. They told us, “Isla needs help breathing,” and we were ushered out of the room as they intubated our daughter. My mind couldn’t even begin to wrap around the fact that Isla wasn’t breathing. All I could do was play over and over in my mind the fact that Isla had been alone in her bedroom having a seizure and we didn’t know. We weren’t there with her. The seizure could’ve lasted long enough to cause brain damage and Isla, as we knew her, might never come back to us. In that moment all I could think was, it was my fault. Everything was my fault.
Earlier in the month, Isla’s Individual Education Plan meeting revolved around one fact- Isla cannot focus. Her inability to focus was making it difficult for her to gain and retain skills. Her developmental pediatrician, witnessing the same issue, recommended a blood pressure medication that might help her focus. Her pediatrician talked it over with other doctors and we collectively decided to give this medicine a try. I was incredibly eager because perhaps this would take one obstacle out of her way. Maybe life would be a little easier for her. We began the medicine on Monday and by Friday night I felt defeated; not only was the medicine not doing what we’d hoped, Isla seemed even more hazy and muted. That Friday night I experienced a type of despair I rarely feel, one that I feared would consume me. It was a feeling that had been building for quite some time. I felt like whatever we were doing wasn’t working; I felt like we were missing some important piece. Everything was so hard. It was like we were working double-time but not moving forward. I was exhausted. I lay in bed in the darkness and whispered to my sleeping husband that I felt really sad.
In the emergency room, I couldn’t separate my feelings from the night before from the chaos of the day. The immense guilt about my sadness and despair was crushing me. All of my feelings and actions felt incredibly selfish. In my mind, the sadness was somehow connected to the mess we found ourselves in that Saturday morning.
Nate and I stood, sat, hugged, stood again, and paced the ER hallway. I’d never felt closer and further away from someone at the same time. We couldn’t comfort each other because we were both terrified. We were both drowning. I kept asking him over and over again, “Is it my fault?” “Did we stay in bed too long?” “Was it the medicine?” “Why did I put her on that medicine?” “She was unusually tired last night, I should have known something was wrong and taken her to the doctor.” “Why can’t I just appreciate what is? Why do I have to try to change things?”
After Isla was intubated she had another seizure, and this one the doctors couldn’t stop. We stood helpless; rubbing her legs and arms, telling her it was okay, telling her we loved her. Finally, it relented and we were transferred to Pediatric Intensive Care. Family and friends arrived and we sat and waited.
I wept to a friend that I knew it was my fault. She listened, held me and told me no, it couldn’t possibly have been. I tried not to get lost in thoughts that would do nothing for us, or for Isla.
Isla was sedated and all we could do was wait and hope. I chose to focus on the only thing I could hold on to- the fact that her lips were pink when Nate found her in her bed. She had oxygen when he found her. For the next 14 hours it was all I had until they extubated her and took her off the sedation.
Only one parent was allowed to stay overnight so I went home to be with Lucia and Nate stayed the night in the hospital. He called me when I got home to tell me they’d extubated Isla and she’d woken up. I rushed back to the hospital to find Isla convulsing and repeating “Hi mama, hi dada.” Over the next 12 hours the convulsing movements became aggressive thrashing, and the manic repetition of “hi mama” and “hi dada” continued. This was not what the doctors had expected and they were unable to tell us if this was a result of the seizures, or the sedation, or the seizure medication. I asked as many people I could, in as many ways as I could, “Is this from the seizure, or is it from the medicine?” I was begging for comfort, but no one could tell us, so we just had to wait for Isla.
That night, as my family circled around, Isla came back to us for a moment. Our bodies exhaled. She was here. We felt so lucky. Over the next few days we continued to see bits and pieces of our Isla. She took some steps forward and some steps backward. Some things were new, and some things were different.
Isla kissed me more in the hospital that week than she had in her entire life. She kissed me, she held me close to her, and she looked in my eyes. I spent the better part of the week lying in her hospital bed absorbing her love. As she layered this affection on me, I found something. I found a truth. A truth I have never shared in my writing, a truth that Nate and I had never discussed, a truth I hadn’t even allowed myself to think in my own mind.
Isla rarely showed us love the way other children do. She needs us for lots of things most children her age no longer need their parents for, like eating and dressing, walking up and down stairs, negotiating questions from strangers like “How old are you?” But she didn’t like to hold hands, or hug goodbye before she ran into class in the morning, or kiss us goodnight. Isla is vibrant and joyful, and there would be moments when her sunshine poured directly onto you, but these moments were rare; just a glimpse of what it could be like. There was always a disconnection.
My work is based in seeking and creating connections; I value deep relationships with the people in my life above all else. And there was something blocking my daughter and I from truly connecting. I never admitted it to myself, let alone say out loud that it was killing me to feel like there was something standing in between Isla and I. We could see each other across the water but we couldn’t find the boat to get across.
Now, in a hospital bed with this little girl who suddenly couldn’t get close enough to me, I was able to see the hurt, and to feel how much I’d been wanting to be close to her. I understood why I made every decision I made, every feeling I had, and it didn’t make me a bad mom or a bad person; it just made me a person, a human, a mom. I wanted to feel her love.
Isla does have a seizure disorder and the blood pressure medicine we gave her may have lowered her defenses against having a seizure. Even knowing that, I’ve forgiven us for our choice, because of course we tried the medicine and of course we cried when it didn’t work; we would move mountains to get closer to Isla.
Isla endured a prolonged seizure and a resulting brain injury. A wonderful new doctor was able to share this news with us in a compassionate way that allowed us, amidst our pain, to see the potential for Isla’s brain to find new pathways, just like it was already doing from the brain injury she sustained during birth. Isla has always had to work harder to do things that other people don’t even have to think about.
The doctor helped me to understand, as no other doctor had been able, the power in how she was already working around her injury.
Isla is a force. And we have a clearer understanding of what opportunities we need to create to help her build those new pathways. We have a clearer idea of which mountains need to be moved.
It has never mattered to Nate or me if either one of our girls is in the top of their class; we just want them to be happy and to be able to experience love. Isla’s speech is not where it was before the seizure, but she is present in a different way and that is everything. She kisses me now. She says excitedly, “You came back!” when I come home from work. She says, “Want to play with me Mama?” Yes Isla, I do.
When Isla first started having seizures five months ago, the doctors didn’t think Isla had a seizure disorder. They missed the signs. Isla illuminated the path for us. We see a way forward, and it begins with forgiveness.