I’ve been struggling to write this post. I’ve been struggling with this part of our story, quite honestly, for a long time. It’s part of our story I hate to say aloud. It’s part of our story I feel people don’t believe, or don’t get, or can’t comprehend. I want to feel validated and until recently I didn’t.
Perhaps it was through the validation of the doctors I’ve become braver in talking about this and through my bravery felt more validated by peers. How we perceive what others think is often a tricky business and we are often wrong in what we think others think. Anyway… I’m stalling…
Gavyn does not have a short-term memory.
When he was little, we could never get him up to the milestone of two-step directions. It nagged at me. A lot. Everyone sort of dismissed it as he was struggling with his health a lot, there were more important things to worry about, whatever. It was that mom-sense thing, I just knew it was a real problem. In 2016 we went back to his original neurologist who I love, and she was monitoring the memory issue. But until September when he had another grand-mal seizure I didn’t feel it was getting the attention it should.
Since that seizure, we’ve watched our boy slowly slow down. His memory seems worse. His movements have slowed. His tiredness has increased. He’s struggling. We scheduled a 24-hour long EEG and found his epilepsy had evolved and we needed to change all his meds. We’ve been working on that for the last several weeks and until everything normalizes, I don’t think we can see benefits or negatives.
I worry about him like I didn’t know I could worry. Don’t Christianese it for me either. I do trust God with him. Every. Friggin. Day. I know God has him. Has a plan for him. Loves him more than I do. And whatever happens will be. But he’s almost 9 and if he walks from the kitchen table to the bathroom to go potty, when he gets to the bathroom, he won’t remember why he’s there. This is real. If my eye is not on him when we are out I legit panic. Because anything could happen. He once left our front yard, walked up the hill to a neighbor’s house, and did not remember walking up there or why he was there. For him to not have a short-term memory is terrifying for me and I can’t imagine how frustrating for him.
But man does he cope. He is the friendliest, nicest, sweetest kid you will meet. Which is why I think people don’t take me seriously sometimes. He jokes with adults in a way most kids don’t. He’s charming. He is the best of us in so many ways.
And every time my phone rings I worry it’s school and I fear they will tell me he’s seizing. I worry we are one brain surgery away from irreversible damage. I fear meds will take a toll on his little body but what happens if a seizure won’t stop? When I’m with him I can barely take my eyes off him. My mind is continually in tune with him. Each movement, each look of the eye, each twitch, I know them.
He is my most precious thing. He is the sun for our family’s solar system. And he can’t remember shit.