I remember the day it began- because of course you never forget. And the odd thing about those days is that you don’t realize when you wake up that it will be a day that changes your life. When you wake up it is just a day. It is a Monday or a Wednesday. It’s just a day. For me it was Sunday.
It started with a birthday party for a friend’s toddler. It started by watching my three year old son playing and showing off my ten week old daughter. After all the excitement my son was tired. Like I always did, I went to put him down for a nap. I snuggled him as he drifted off to sleep. Or rather, he should have drifted off to sleep.
Instead he began twitching his hand in mine and then he was shaking rhythmically in my arms. And I didn’t know it as I screamed for help, as I waited for the ambulance, as I watched helplessly while he seized, that it had begun. I didn’t know about the hospital stays, the sleep deprived EEG’s, the med evac flights, the doctor’s visits, the meds, the side effects, the IEP’s, the sleep studies and all the other parts of parenting a child with epilepsy. At that moment I only knew that my baby was sick and that I couldn’t help him.
But it had begun. That day changed the trajectory of our lives. I found strength I did not know I had. I learned (slowly) that whatever expert I met, I was still the expert on my son and that I needed to stand up for what I felt in my heart to be right. I learned that parenting a child with a serious illness is a marathon and not a sprint. I learned that there are good days and bad days and though the good days often outnumber the bad, the bad ones can be so bad that they leave you reeling. I learned that asking for help on those bad days is the only way to survive it.
I also learned that people can get used to anything. The medication regimen that once seemed so difficult to coordinate became routine and the schedules that once overwhelmed us became second nature. It all just became the new normal, such that some days I forgot what it was ever like before it all began.
And it’s funny because although I can mark the day it began, I can’t mark the day it ended. We are mercifully three years seizure and medication free. I no longer watch him vigilantly while he plays (though watching him twitch in his sleep still terrifies me). I no longer worry every time I leave the house. I have adjusted to our new “new normal.”
But it’s not the same as it was before it began. I and my family were changed and marked by that day and the ones that followed. We were altered in ways mundane and meaningful. I am a better mother and advocate now than I was on that day- not that I was bad before or that I wanted to learn in the way that I did.
Life happened on that day. I can mark the before and the after. I also know that there will be other befores and afters- hopefully less traumatic than that one. Every morning I wake up, life can happen to me. And I know now I can survive it.
Thank you for writing this blog. As a sick child, I never really took the time the view it from my mother’s perspective. I shared this blog with my mom after reading it. She read it in silence with tears in her eyes. I sincerely thank you. I hope that this blog will help others.