17 hours ago
Wednesday, April 15, 2015
The very real monster in the dark
KNOCK KNOCK KNOCK KNOCK. The noise jolts me awake at 3:40 a.m. Instantly, I know what it is. Our babysitter tucked Max in last night because I got home late, and she closed his bedroom door instead of leaving it ajar like Dave and I know to. Now Max can't get out, so he's banging on his door. The cerebral palsy makes his fingers stiff and he can't twist the door knob.
KNOCK KNOCK KNOCK KNOCK KNOCK KNOCK KNOCK.
I jump out of bed, open Max's door and help him in the bathroom. Then I tuck him in, kiss his forehead and return to bed. Only I can't sleep with all the thoughts rushing through my head.
I think about how I've been lax in getting an adaptive handle for Max's door; I've seen them sold at sites for people with arthritis and the elderly. He's getting older, and probably would like to fully close his door sometimes and be able to open it independently. Come to think of it, we could also use one for the basement door, not that I want him going down those steep stairs without one of us around.
I think about what would happen if I didn't hear Max knocking. He'd eventually give up, go back to bed and have an accident. It would be upsetting to him. It wouldn't be fair.
I think about the issues Max has with manipulating door knobs. Will that change over the years? In the scheme of life skills, it is not one we have ever brought up with the occupational therapists, given that we're still working on biggies like pulling pants up and down, taking a jacket on and off and brushing teeth.
And then, my mind goes to that scary place, the one I try to avoid. I wonder about a time when I will no longer be around to turn the door knob for Max. Who will hear him knocking in the night? Who will take care of him like I do? How will he someday get by in this world without me and Dave? How will he even comprehend that we are gone? Who will be there for him?
This is the amorphous monster of my nightmares.
Suddenly, I just can't lie there anymore. I get out of bed, creep into Max's room and sit on the edge of his bed. I listen to his even breaths, and focus on those. It's calming. My mind can't wander as I hear him sleep so peacefully and peer into his sweet face in the light of the moonlight.
I leave his door open. I return to bed. Slowly, I nod off. I'll wake up to taking life one more day, one more night, at a time.
Posted by Ellen Seidman at 6:35 AM