For those of you that know me, you probably realize that I have a bunch of kids, pretty much all adults now. What most of you don’t realize is that my oldest child (girl-child) has epilepsy. It’s not a secret, it’s just that she has been stable since her teen years (over 10 years now – yeah, baby!) so there hasn’t been lots to talk about. Her younger years, boy, they were something.
My daughter had a lot of seizures and they took on many forms. She would fall down and shake and tremor and then come to again and have no memory of that happening. That’s what most people think about when they think of epilepsy but seizures are much more than that. For my daughter, she would also have moments where she would space out and then come back. So, she would be standing there talking to you and then suddenly – big empty space while she just stared – and then poof, back as if nothing happened. Once, in grade 8, she got smoked in the head with the basketball because she did that in gym class and of course, you don’t notice what’s happening until she doesn’t respond (which was right when her buddy threw the basketball at her). The most challenging forms of seizures she used to have were hallucinations. Bet you didn’t know that epileptics could hallucinate as part of their seizure activity (see how much you’re learning!!). She would have audio, visual and sensory hallucinations. One time she heard a cat meowing when we were in the dining room (there were no cats in my house). One time she saw Bambi and Bambi’s mother on the front lawn (she was still quite young then). One time she smelled burning toast when no one was cooking. It wasn’t all fun and games though. Sometimes she would not be “there” during the hallucinations and reacting to whatever it was she was seeing or hearing or experiencing. Some of those hallucinations were wild. Once, she tried getting away from giant spiders on her ceiling at 2 am. I don’t think anyone slept for the first 16 years of her life.
I tell you all this because once when she was young we went shopping at Wal-Mart (I know, I know, I have no excuses). It was right before Christmas and I was in fine mommy-dearest form since I was crabby and impatient and miserable (Wal-Mart before Christmas, what can I say… ). I had her and her younger brother with me and there was something I needed to get. As I’m looking through the aisles, I turn the corner distracted, look up and girl-child is gone. At first I’m a little irritated, wondering why on earth she didn’t turn the corner of the aisle with me. So I drag the little boy-child around the corner and wouldn’t you know, she wasn’t there. The first little fingers of panic start to creep in and suddenly I’m moving much faster than I was 10 seconds ago. Any trace of irritation is quickly being replaced by a growing sense of panic and dread as I look up and down the aisles and can’t find her anywhere. My girl child was missing.
Just like that, she was gone and in those moments, my world stopped.
I think it’s every parent’s nightmare thinking about something happening to your children but most especially, them disappearing without a trace. Maybe lost, maybe hurt, maybe taken by someone – the thought is paralyzing. I got my daughter back with some help from store employees. They stood guard at both entrances / exits and we found her in the store. I had to wait in one spot so that we wouldn’t all be running around like idiots and waiting like that and thinking about what would happen if we couldn’t find her – I thought I was going to die. What if she was hallucinating and walked out the door across the parking lot? She would have no idea that there was a car barreling towards her because she would be somewhere else in her head. What we figure happened is that she blanked out and when she came back I was magically gone and she just walked away looking for me. When I went back around the corner, she had already turned in the other direction and we just kept missing each other.
My story has a happy ending and it still makes me anxious and teary when I think about it. For thousands of parents, there is no happy ending because there is no ending. May 25th is National Missing Children’s Awareness day. http://www.mcsc.ca/ Please take a moment to pay your respects whether it be through sending the link, sharing their stories or otherwise sending good thoughts through the universe (or whatever it is you do). My strength to them because for a millisecond I felt what they get to feel like every moment of every day. It’s more than anyone should ever have to bear.