I cannot wrap my head around cell death. I know that my daughter experiences cell death on a regular basis around the nerve sheaths of her central and peripheral nervous system. The disease destructs brain cells. That’s the nature of her disease. But I still don’t get cell death—it’s too nuanced and invisible for me to understand. Plus, the girl has grown almost three inches since the doctors last measured her! Last week when the physical therapist was visiting Sylvie, she spent her hour at our house readjusting Sylvie’s chair and stander so my daughter would fit more properly. What a delight! My daughter is growing, even with cell death occurring in her tiny little body.
But then I gasp at the unexpected dilemmas this growth spurt brings with it. At some point, unless we put Sylvie on a feeding tube, her meal times are going to get more awkward—we can’t keep holding her every time we give her food or a bottle. And walking up and down the steps with her in our arms is going to get more challenging as she lengthens out and gains more weight. I’m not complaining—I welcome these dilemmas, it’s just that we were operating in crisis mode for the last couple of years that it never occurred to me that we may have to think about our growing child, who nevertheless has lost her ability to feed herself and sit unassisted.
A couple of months ago, Sylvie’s stay-at-home papa, the delightful man I have chosen to live with for fifteen years, thought about what it would be like if Sylvie could talk. We know Sylvie has an active brain, with a wicked sense of humor. She recognizes people and lets us know through her smile and laugh; she will pout if she is unhappy. If we tell her what is next on the family agenda, the girl lets us know she hears us and is up for the next adventure (or not!). What if she could tell us about her daily life with us—as we grab her, feed her, clothe her, talk about her sometimes as if she’s more of an inanimate object than our breathing, living daughter? What would Sylvie say about her observations? Here’s what Tom came up with:
Dreamplanting by Tom Schicker (Sylvie’s papa, a.k.a. “The Big One”)
I am not a plant. The big ones -- the ones that smile at me when I wake -- know this. I suppose I do possess more tree-traits than the big ones and the other little ones like me. Oh, I make noises that trees cannot, but as far as I can tell, trees never move the way the other ones do. We stay put, the trees and I. Unless, of course, a big one lifts me up and moves me. I’ve yet to see an oak carried about like me, but I remain hopeful.
One thing that I really don’t like about the others moving me is the button: the second from the top, mid-chest level. Neither the deftness of the others nor the intensity of my dreams can consistently keep the weight of my head from pushing my face against these infernal plastic landmines. “Is your tummy upset?” Why do I always hear that when I cry about the button?
The big one I see the most used to wear buttons a lot. I know this because of a dream. I would squirm away from the buttons and put the side of my head against the smooth cloth. I would do this, and I would move my hands and grab the chin. The dream is so real that I know it really happened once. This big one almost never wears buttons anymore, which suits me just fine.
My dreams are very important. Almost everything that I do happens there. I work very hard at dreaming because sometimes dreams come true, you know. Sometimes, when I really want something – like a taste of chocolate or the touch of a silk scarf – my arm moves toward the chocolate, or whatever. I dream that I’m holding the chocolate, but then something happens to the dream. My arms start bobbing like maple limbs in a big wind , then the light, and then I either laugh or cry, depending on whether I hurt or not. It might not seem worth it, but I like chocolate and I might get it without any help one day.
Big ones often think I’m sleeping when I’m working on my dreams. They say, “That little one’s all worn out!” My big one is often holding me when this happens. My big one sighs and smiles, but as we move away I note that the light grip on my wrist usually tightens a bit.
Feigned sleep is by far my favorite trick. I get good dreaming done, and I get to hear my big ones talk a lot. Just yesterday: “I had the dream that she was crawling again.” I know that one! The big ones then stood, like twin pines, very close to each other. Then they put their arms around each other for a long time. I like when they do that. They are not plants either.
I am dreaming of a new trick to play on my big ones. I am so busy that I cry at the least disturbance. I will need to focus! Crawling, I decide, is not for me. I will wait for just the right moment when my big one is holding me close, wearing a shirt with buttons. I will feel a disc pressing under my cheekbone and I will dream a ferocious dream. Not only will I turn my head in triumph, away from the offending button, but my arms will not bob. I will flap them like wings and I will fly.