I have been blessed with the gift of raising an amazing daughter. A child who feels things so deeply but on the surface is calm. Her love and loyalty are bottomless. She is a girl who at times is so impassioned about the injustices she sees around her that she rages. I believe she has the potential to change history. But this moment in time, this present reality, is not easy for either of us.
“You’re so calm.” I’ve heard this from doctors and nurses and countless others when dealing with Cait’s seizures. And it’s true. I tend to be calm when she’s having a seizure … at least on the outside. Inside I’m not thinking. I’m not aware of anything except the rush of panic and fear because, while she’s in the middle of the seizure, she’s gone. If her eyes are open, I can clearly see that my Caitie is not there, she’s somewhere else. I have no idea where she is but I do know the spirit of her has disappeared from the reality I am living in. And I don’t know if she will come back.
As the seizure ends, her eyes focus on me, realization floods her face and the horror takes over. Then I reassure her (and myself). She’s alright. She’s fine. It will be okay.
This last year of Cait’s epilepsy has been a bit overwhelming. Her decision to talk about her disorder was a big shift for us as a family. I’m incredibly proud of her for doing so but it has brought her epilepsy into focus for us. Going off her medication has done that even more so. Before she started on this journey it was easy to forget about her epilepsy. She was so well controlled on her medication, 18 months without a single seizure, that I honestly didn’t give her epilepsy much thought. But now we have to. And while I think that’s a good thing, it’s also a hard thing.
Last night as I was driving home from work, I started to worry about the text she had sent me at 6:30 saying she was going to bed hours before her usual bedtime. She’d been suffering from daily headaches throughout the week, one a migraine. And at 9:40 p.m. on my long commute I started to obsess about all the things that could go wrong when I wasn’t there. What if she had a seizure and fell out of bed and cracked her head on the multitude of stuff that was strewn through her stereotypically teenage room? What if she fell asleep only to have a seizure and succumbed to SUDEP?
Later in the night I woke to hear her calling for me. She had another headache that was so severe it pulled her from a sound sleep. It was her second massive headache this week. And I mentally calculated the date of her last MRI, silently asking myself what if the doctors had missed something?
Last weekend her friend was over and he reminded her of the day last month when he had missed part of his classes to sit with her at school when she was having small seizures. She had no memory of him being there. None. And I was reminded of all the things epilepsy steals from her.
And the worry just starts bubbling.
I’m usually optimistic. I tend to follow the mantra that things happen for a reason. It will get better. It could be worse and we are SO blessed.
But today was another struggle. She didn’t want to go to school. She wanted to stay home, not because of a headache but because she was scared again. Scared she would have a seizure in front of everyone.
And so we had tears. And I pushed her out the door. And she went. And I felt horrible. Once again I’m angry that she has to go through this. High school is hard enough without the fear of seizures constantly haunting her. And, yes, these experiences have made her the incredibly unique individual she is today but that doesn’t mean they are easy for her to go through or easy for me, as a parent, to watch her go through.
But it will get better. I do believe this. For now we can be present in the moment, remember to breathe and let life unfold as it’s meant to. Ironically, it’s Cait who is better at this than I am. Her patience astounds me. And I’m reminded of the great gift I have been given in this wise child who teaches me so much as she approaches her challenges with a poise I could never achieve. Blessings, indeed.