“Why?”: How Avoiding This Question Has Helped Me Cope With My Daughter’s Epilepsy Diagnosis
Last updated: May 2022
Everything happens for a reason... right?
Asking "why" is the beginning of a seemingly simple question. For much of my adolescent and adult life, I had lived under the guise that things happen for a reason. Even more so, I believed I had the ability to understand that reason and control the outcome.
That is, until refractory epilepsy entered my life.
Was her epilepsy diagnosis my fault?
When Juniper was diagnosed with infantile spasms, I spent months trying to make sense of how and why this happened to my seemingly healthy baby girl. Was it the sip of alcohol I had while pregnant? The flu I suffered through during the third trimester? Maybe it was the universe "getting back at me" for bad behavior in the past. Was middle school Hailey too mean? Too selfish? Did I deserve this in some way? Could I have prevented it?
Not surprisingly, this question of "why" and the belief that I in some way could have controlled this outcome for my daughter began to take a toll on my mental health. The more I sought out an explanation, the more desperate I became. I wanted to blame someone, anyone. Even if this meant blaming myself for something I knew I really had no control over.
If I could blame someone or something for my daughter's condition, it upheld that truth that I had lived by for so long: that everything happens for a reason. There is always a "why."
A changing perspective on "why"
Then, one day, when I was telling my daughter's story, an acquaintance remarked: "Well, everything happens for a reason. I'm sure we will learn so much from Juniper."
At that moment, something inside me shifted. I felt triggered, blamed. For the first time, the idea that I could have prevented this outcome for my daughter left me feeling defensive rather than calmed. Even more so, I felt as if someone was implying my daughter's purpose was defined by her epilepsy and what she could teach others.
The truth is, there was nothing I needed to learn. Even more so, the universe wouldn’t be so cruel as to give my daughter a catastrophic disease like epilepsy in order to teach me a lesson. Would it?
I began to see the reality of what things were. There was no reason for Juniper's epilepsy beyond the scientific reason of neurons not migrating to where they were "supposed" to go. There was nothing I could have done to prevent this. There was no one to blame. There was no "why."
Coping with my new reality
For a while, this revelation shook me to the core. It took the truth that I had been living by for much of my life and flipped it upside down. If some things just happen, without reason, it means that the control I once thought I had over my life – and that of my children's lives – is significantly less than I thought.
It means that sometimes, there is no one to blame. Even worse, it means that sometimes, bad things just happen. Out of the blue. Without reason. And the only way through it is to just keep going.
I wish there was a "why." I wish there could be a clear explanation beyond science that explains why some kids get sick and some kids don't. I wish it was something we could control. However, that's not how the world works.
I no longer try to make meaning from my daughter's diagnosis. And while there is much I am learning about myself due to this shift in life plans, it was and never will be my daughter's purpose to teach me anything. She is just a child. And epilepsy just happened.
Since being diagnosed with epilepsy, has your memory been impacted?