December 10th, 2013
What does it feel like to live with a child who has seizures? When our son’s seizures are under control by his meds, there are moments where I can actually forget and can be a “normal” family that worries about “normal” things like when should we move the baby crib out in exchange for a big boy bed or when to start Kindergarten or soccer lessons…or visit Disney? Sometimes, it even feels like I’ve escaped something horrible, unspeakable and that I outsmarted the beast that haunted our lives and I remember that I loved writing and allow myself to create fiction again because reality isn’t drowning me in fear.
Then our son gives me that look and I know what is coming as he walks toward me for a snuggle while the seizure is taking over the moment. Which moment? Maybe that great family moment when everyone is bundled up with scarves and hats and gloves and we find the perfect Christmas tree and help saw it down and say words like, “yay” and “I love that one.” And then.
And then. (And I know those of you who know, know the “then”) I’m sitting in a snow bank holding our boy and starting to count and note seconds and try to get a glimpse of his face through all that winter gear I forced on him to stay warm that’s now in my god damn way from seeing his face and whether his face is twitching and dropping expressions. And I have to do this now. This job of mine, which went from searching for the perfect Christmas tree in the Deschuttes National Forest and taking in the way the water is frozen along Tumalo Creek in parts and the peace of it all to this moment right now. The one with our son in my arms having another seizure he does not deserve. I force myself to look up to the tree tops and promise I won’t let this be the memory of today. I make a mental promise to our sons (even the one without the seizure disorder) that today is still extraordinary.
