How Parenting Our Daughter With Undiagnosed Disabilities Is Like Paddling a Rowboat
For three years I’ve felt like we are on a tiny rowboat in the middle of the open sea, not sure of which direction to row.
Completely out of the blue, my daughter Isla had two grand mal seizures. After the initial shock of the events wore off, I began to do a bit of research on seizures, which started to paint a picture of our Isla. Confusing moments with her like stares that couldn’t be broken, and falling from a standing-still position from out of nowhere started to seem like they were pointing in a direction, toward a piece of our puzzle. I read anecdotes of other children exhibiting these behaviors in whom there was an underlying condition of epilepsy. With this diagnosis there might be a treatment; there might be medication.
I understand fully that labeling a child with a diagnosis can be limiting, but it also comes with answers and support — that part would be nice. I allowed myself to imagine our boat was nearing land. I could see it; there was a lighthouse in the distance calling us in, and when we arrived on land there would be people welcoming us, people who had traveled down our path before and had been waiting for us to arrive. They would tell us they understand and they would become our guides. They would direct us to the right doctors, the right interventions, the right schools — all specifically tailored to Isla’s needs. The path would finally become illuminated. I became dazzled by this light in the distance. My mind began to race with exciting possibilities, and I started paddling as fast as I could against the current, against the voices of those closest to me who warned me this might just be a mirage. I kept paddling.
You see, Nate and I live in a constant tension of loving and honoring Isla exactly as she is, while at the same time searching for answers that could unlock a door that might make life a bit easier for her. It is a balancing act that doesn’t always live harmoniously within us.
The testing to pinpoint what caused the seizures began, and slowly, as results starting to trickle in, so did doubt. Here we were yet again with nothing conclusive. No answers. There were more tests, longer tests, new tests. Perhaps that light shining in the distance wasn’t for us. We stand facing the initial trauma of Isla’s brain damage all over again, for which there has never been a determined source, or a predicted outcome. Our hearts are out of our bodies again, exposed to the elements as we imagine the painful experiences Isla may encounter in the world because of this.
As the sadness and doubt started to enter me, our boat began to fill with water. I sat there and watched it pour in. I allowed myself the luxury of slipping under it. I could hear voices calling for me to come up for air, to paddle on, but I just felt so exhausted. It’s not like me to stay under the water, to not want to participate in the world, but I wanted to hide in the darkness just a bit longer.
Slowly, above the water I could see life rafts being thrown towards me. I knew if I stayed under the water, I would take our little family down with me, so I eventually grabbed hold and allowed myself to be pulled up. When I came to the top of the water, I could see lifeboats all around us.
The rafts weren’t a diagnosis or a path, they were just people — the people we love, people near and far from us. Some tried and true, and some who surprised us. They didn’t have the answers; they were just love surrounding us, surrounding Isla. Our people wanting to be with us even through the choppiest of waves. They put arms around us and looked in our eyes and said things that brought comfort, things like “Isla is a wondrous little being and perfect for a world that doesn’t make space for any of us, especially those of us who don’t conform to normative standards. The world really needs to meet her and bend itself to accommodate her needs.” Sometimes you can’t see the road ahead of you, and you need a reminder from a friend of the greater purpose of your path.
I let their words and their light in. I decided to hold on against a current that doesn’t automatically bend for anyone, and to once again be thankful for all of it. I decided to empty the water out of the boat and keep paddling, so one day I can tell Isla we followed every light we could, we searched under every rock, we fought every fight. And all the while we loved you just as you are, Isla Kai.
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