There was a time, now dimly remembered, when I got to go to the bathroom by myself.
I got to shower by myself too, and when I wanted a moment of alone time, I got to spend it actually alone. Amazing how I took that incredible luxury for granted-- all those times I took long, blissful baths without being serenaded by a woman's voice chirping "The cow says. . . Moo!" eight thousand times from three feet away.
It's been two years since Connor began having these seizures that require mouth-to-mouth resuscitation. Because we have virtually no warning when they will occur and he cannot tell us when he feels one coming on, the advent of these seizures was the end of my alone time. I'm not sure Connor even understands what being alone is-- the only time he doesn't have someone physically in the room with him is when he is in bed, and even then he doesn't have any real privacy, thanks to his apnea monitor, which transmits every tiny motion and sound he makes directly to me via the receiver set up near my laptop or bed.
So for the past two years, except for our precious respite care hours or weekends when Jeremy is home, when I go to the bathroom Connor is in there too, his wheelchair facing the wall but angled so I can see if he slumps over. When I shower, it's with the curtain pulled half-back so I can watch him play with his toys in the bathroom. When I do laundry, I balance the basket on the handles of his wheelchair as I pull clothes out of the dryer. When I do my makeup, Connor watches me in the mirror. If I have to run out to the car for something or I need to check the mail, it's with Connor in tow. At night, once he goes down to sleep, I have the freedom of the house, but the garage and yard are off-limits because I can't hear the alarm if it sounds. When I signed up for this parenting gig, it was with the understanding that I wouldn't have very much "me" time anymore, but this wasn't quite what I'd imagined that would be like.
I'm pretty used to it for the most part, but in recent weeks Connor's episodes have become more frequent and the symptoms have worsened. Because of this we're now in the process of switching to a new medication and have been told to expect breakthrough seizures, which has me jumpy. Connor is taking full advantage of this; he's discovered that if he slumps over in his wheelchair and doesn't move, he gets attention really really quickly. Needless to say, "Scare The Mommy" has become a new, extremely fun game for him. I am not quite so thrilled about it. This wonderful development has coincided with our respite care worker leaving for some training out-of-state, which means fewer breaks for me. Not a good combination.
I'm hoping that the new medication will work and we can go back to that blissful time period when I could leave Connor playing in the living room and go to the bathroom by myself. Because I must admit I've started saving all of my errands for the weekends when Jeremy is home and can watch the little guy. "I'll just pop off to the grocery store," I've started saying, "I'll be right back." Then I drive the three blocks it takes to get there at five miles an hour, and go up and down every aisle at least twice. I think my husband is getting suspicious; it didn't used to take me three hours to get a gallon of milk and two carrots, but I can't really help myself. Being alone is just so blissful and it happens so little these days.
If the grocery store had a bathtub, I might never leave.
Jess writes daily about her family over at her blog, Connor's Song.