He flicks his fingers close to his eyes in the dark. The shadows in the room make it seem like an attack of butterflies around his face. They come hard and fast and are followed by head shaking and loud outbursts — not like he is scared, because then he laughs — but more as if he is excited and retelling some complicated tale in the dark.
He has joined us here in our king-sized bed, the one we so wisely upgraded to when we moved home last year, because 2+ hours of loud shouts and maniacal laughter have already woken his brother once. He volleys between his dad and me, seeking us out with tight hands and cold feet. I glance at the clock: 3:30, he’s been at this for more than two hours. His body nearly hums with energy, with something new — I don’t know what it is, but tonight it scares me because it has a different quality — it’s an involuntary compulsion.
I envelop him with my arms and hold him close. “Shh…” I say, stroking his forehead, trying to get him to stop. He is so strong for just five, for such a skinny boy. He pulls away and turns onto his stomach and starts hammering out a beat with his hands on the mattress: b’dum, b’dum, b’dum-b’dum-b’dum, b’dum, b’dum. Over and over.
I try again, whispering a song to try to snap him out of it: “Row, row, row your boat, gently down the stream…”
“Bed!” he yells suddenly.
I say “John’s bed?”
“John’s bed!” he repeats.
Thrilled he’s communicated something (which I immediately expand in my head to Gosh, Mom, I just wanted my own bed, do I need to mime it out for you?) I carry him to his room, hopeful that he will lie down and fall back to sleep at last.
Instead, he stands in his bed and throws stuffed animals around, yelling to me: “Lullaby songs?”, his favorite music CD, one he’s been falling asleep to now for years. Lately, however, he’s asked for it even in the middle of the day — retreating to his room, alone, pushing me out the door. Bye? he urges, then closes the door. I’ve peeked in to see him organizing his stuffed animals in a circle: first the cast of Sesame Street, then the Backyardigans, then all the miscellaneous penguins (there are many). Obviously in John’s world 3:30 a.m. is no different from 3:30 in the afternoon.
But this — this energy, this yearning for something — the push and pull of his body, the drumbeat on the mattress, the finger flickers, these are things he may do during the day, but at night are magnified a thousand times. We’ve had MRIs, EEGs, we’ve expressed concerns about possible seizures — MRIs have been clean, no sign of seizure activity.
And still: something seems wrong.
He’s been on clonidine for three weeks now, but you would never know. When the neurologist said he had a medication in mind for John, it was all I could do to not jump into his arms and kiss him. I first heard about clonidine from Christine over at Day Sixty-Seven. Oliver’s early success on it thrilled me and made me hopeful that it would be the magic bullet we needed for John.
Lesson 1 — there are no magic bullets.
Lesson 2 — if we know John will be up at least every other night from 1 a.m. on, we really should go to bed ourselves before midnight.
Happy New Year, blog friends.