Warning : This post is going to be less funny and/or heartwarming (I’m working under the assumption that most of my posts are either or both, just go with it), and more tedious to read than probably anything else you’ll find on this blog, if only because I didn’t post any pictures of my super-photogenic kids. Okay, maybe also because it was exhausting enough just to write this post.
Don’t say I didn’t warn you. Because I just did. Right then.
I was up a lot last night, in part due to a nasty head cold, a sleepless eight-month-old (probably because she had been siphoning non-drowsy Robitussin from me all day), and a sporadically-malfunctioning baby monitor (there may or may not have been space invaders hovering over our house scrambling the signal. But no one was abducted, and all I lost were a few minutes of already-restless sleep here and there, whenever the monitor by my head would beep and squeal angrily at me and my audacity).
But the real reason I lost sleep was because I just couldn’t wrap my head around it. It. The IT that will plague me, my husband, and my son for the next two to five years. Well, not so much my son, because it doesn’t really matter to him, so long as he can karate chop things.
In five weeks, we will no longer have the crutch that his daily medicine has become. And I know, in itself, epilepsy is far from life-threatening. It is, at its essence, something inconvenient, a little debilitating, but nothing a good, long nap can’t fix. It looks scary, when you’re in the thick of an epileptic episode, but in all honesty, it is much, much more harmless than it appears. In fact, our neurologist just gave us an over-the-shoulder warning to be a wee bit more diligent when he swims, climbs, or bathes, three things that take up the tiniest sliver of his overall life, in the off-chance a seizure were to strike at that precise moment.
But still, last night, I kept revisiting that first night, the first time we realized something was terribly, terribly wrong, every detail as sharp as if it had all happened right before I crawled into bed.
The way Bug looked and quivered and shut down as we rushed to the hospital, the way my entire body literally felt ice cold because I couldn’t reach inside him and take away whatever it was that had seized him, and even if I could, I wouldn’t have known where to start, the way Bug’s teeth were chattering in his car seat, his jaw and fists clenched, and I had absolutely no idea what I should do, so I just kept my face next to his face, praying so hard that my chest felt numb, praying that his breathing wouldn’t stop, that he wasn’t, for all I knew, actually dying in the little car seat beside me, how light he felt, despite being half my size, as I carried him into the ER and threw him into the arms of the closest nurse, demanding that she fix it, not knowing if I would ever see his beautiful hazel eyes open again, until they stabbed him with an IV and he howled sweet, precious, bloody mary…
Whew. My heart gets heavy all over, just thinking about it.
But I know nothing will ever be anything like that first night, with the diagnosis that we have, the information we have collected, the education at our disposal, the medical support and knowledge just a phone call away, the research we continue to peruse, the preparedness we have stored away, for ourselves, our family members, Bug’s teachers…I know if or when we have to go down that road again, it won’t be nearly as terrifying or heart-stopping or bone-jarring.
Well. It all sounds good in the morning.
But what if. What if it happens at school. What if it happens at home. What if it happens in the shower. What if it happens at a friend’s house, or when we’re on vacation, or at summer camp, or in the car, or, or, or…
I believe in God. I believe in His plan for my young man. I believe in His protection, His sovereignty, His perfect and divine will. And, repeat. Once more, with feeling.
I have to keep reminding myself of that, because if I say His protection isn’t good enough, am I really just saying that mine is? That I can fix things and keep Bug safe and whole, over the Creator of a brain so complex and intricate that our most brilliant doctors still don’t even really know what exactly is happening when it behaves so unexpectedly and mysteriously? I will easily and gladly trust God with my health and well-being. It is a completely different issue to place my son, my firstborn, my heart, in that Hand, no matter how clearly I know with my head that it really is the safest place for him.
These are my darkest fears. These are my heaviest worries. And they say the best thing for those tangled thoughts is to bring them to light, right?
So don’t worry (Mom…and apparently, Dad), most of the time it’s cool. Most of the time, it’s hard to think there’s something lurking that could knock Bug down and out when he’s running and jumping and kung-fuing and screaming at the top of his lungs and rocking away on his drums and telling me, stream-of-consciousness style, about the invention of the telephone and the Maiasaura all in one breath…
Most of the time, I’m not up all night entertaining dangerous thoughts thanks to a head cold and non-drowsy meds.