It's been almost a year since our Gus Gus had his second status seizure, almost a year since I woke up to a horrible sound and found my son seizing and blue, almost a year since I tucked in a little boy tired from a wonderful Halloween and woke up to a nightmare.
I got a pretty direct reminder of it this week, on my way to work. I was praying a rosary, with my focus on something that now seems trivial. And, while I was laying my wishes at God's feet, I heard this voice in my head say, "Last year about this time, you were saying a rosary that your son would wake up with an intact brain." Subconscious message or divine intervention, either way, I got the message: We've come a long way, baby.
First off, John... talking up a storm, walking, running, learning to ride a bike. Last year, he wasn't able to walk more than two steps without falling. He wasn't able to finish his sentence or find the right word. Those side effects only were for a short time, but what a scary time. He is on maintenance meds, specifically Topamax. We haven't seen any seizures since his EEG. He is such a smart little man, retaining information, learning so quickly, entertaining us whenever he can. We saw a ditch digger at the gas station last week, and he had to tell me all about the supports that come out from the side called stabilizers, and how the trench digger worked, and what the scoop does, and how it takes two drivers to operate. This week, he brought home a worksheet full of little "A"s written with intent concentration in a way only a preschooler can master. He loves his sisters, all of them, and is learning what it means to hurt people's feelings, and cries so whole-heartedly when he learns he hurt someone's feelings unintentionally.
He still talks about Heaven a lot, mostly telling me what it's like there. A couple months ago, I picked him up from daycare, and he randomly informed me that "Heaven looks just like this Earth, only it's not the same. Everyone is everyone but doesn't feel the same as they do here." This mama's heart is grateful he isn't still mad at me for making him come back here "where it hurts."
And then there is Lainie, more than three years post-seizure, and 4 months without preventative epileptic medication. She has changed, without the medication, and it's not a bad thing. She is more assertive, more typical in her emotions. You definitely know when she is upset. Sometimes, she shows her anger more passionately and more publicly than a typical girl her age, but I have to assume that is a side effect of being on a mood stabilizing drug for 6 years. She has not learned how to control her emotional response; or, she is having to learn how to control her emotions in a very short time frame, with a middle school girl emotionally maturity that just isn't there yet. Academically, she is doing well. The attention deficit is still there, definitely, but the processing speed seems to be improving. Or, maybe that's just a mom's wishful thinking. Most importantly, she has not had a seizure... yet.
I can't help looking at John and Lainie, being afraid of The Next Big One, probably not unlike a Californian waiting for the next earthquake. Then, I start realizing there are probably Big Ones out there that I don't even know about, threatening to upset our equilibrium any second. I try to redirect my train of thought, try to not think about my worst fear, that fear of losing a child. Most days I can redirect; some days I can't. But I am not letting my fears keep me from enjoying these moments. If anything, it makes me appreciate every morning they all wake up, and every night they are safely tucked into their beds.
I just hope the rest of the world doesn't have to go through the hurt of losing or almost losing a child to learn the art of appreciating every moment God gives us. And that we can all have compassion for those who have... no matter how long it's been.
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