My daughter has epilepsy. We are fortunate that her seizures are very controlled and have been for some time now. That however doesn’t make the worry go away. I’m always waiting for the next one.
Most days it’s just a thought in the back of my head. When she’s not feeling well however that thought starts to take hold of me. This was one of those weekends. It’s Sunday morning and she has slept over 12 hours now and still not up. I sit and wait. Chances are she’ll get up and be feeling great and just needed the extra sleep. It’s nearly impossible though to get that “what if” thought out of my head.
What if today’s the day of her next seizure? She’s had seizures since she was a baby and we have become quite familiar of what to do. We automatically go into seizure mode. There is no thinking of what to do, it’s just a very natural instinct that takes hold of us. We get her through it, put it behind us, and continue moving on.
Being able to move forward however doesn’t mean that the past is behind us. To this day I have flashbacks of the days when her seizures weren’t controlled. The 911 calls, the emergency rooms, laying awake next to her all night in a hospital listening to her breath. Those memories stay with you forever.
But as I sit here waiting for her to wake up I eventually take control of my fears and realize that the chances of her having a seizure today are slim. My heart goes out to those parents whose children have multiple seizures every day. I can’t even imagine how they make it through one day to the next. Those parents are the incredibly strong ones.
Having a child with a medical condition is scary. Feeling helpless as you watch your child suffer is awful. Over time however you learn to take control, control over as much as you can at least, and that helpless feeling lessens. You become better educated about your child’s condition, you seek out the best doctors and learn to advocate for the things they need.
Having a child with a medical condition also teaches you about what really is important in this world. It’s not about who wins or loses a football game (even though that can be quite painful sometimes). It’s not about if your favorite restaurant closes or if your tv show is cancelled. The little things in this world are not important. Our family, friends and neighbors are what’s important and sometimes we need to be reminded of that.
It’s been 14 hours, I go into her bedroom and wake her up. She pops her head up and asks if it’s a school day. I say no and she says she is going to sleep one more minute. I’m relieved that she didn’t wake up to a seizure. She’ll get up and we’ll go about our day. Today will be a day to be thankful for. In the back of my mind though I’ll be waiting for the next seizure.