Sam inspired me to send you a description of his typical morning, in what I imagine would be his own words. I would call it…
MORNING AT MY HOUSE, BY SAM WOODBURY
Here he comes again, this time at an hour past midnight — Dad-with-flashlight. I coughed and the monitor picked it up. That woke him and alarmed him. In the darkness he just bounced off the corner of a table in my room and now he peers at my face. I pretend to be asleep. He stares at me for a second or two longer and then, satisfied, he turns to leave. He turns off the flashlight and trips on the chair at the foot of my bed, grunts, and then he’s gone.
Now it’s 4:30 a.m. and I’m wide awake. A couple of hours to kill before they usually wake up. Let’s see whether I can knock the TV over with a flying pillow — nope. I guess I’ll sit up and slam the Venetian blind against the window frame over my bed. I like the rhythmic Whack! — Whack! — Whack! as it slams back against the window.
Oooh, Mom has her morning face on! She shuffles in and mumbles something about 5:00 a.m. They think I don’t understand time. I understand that it’s never a good time for things I do that make a lot of noise or cause an unexpected load of laundry.
Well, now I’m on the toilet, my walker before me to keep me steady. They — that Mom-and-Dad pair — had a good idea a while back. I need time on the toilet to get my system moving, lots of time. (Do I understand time or don’t I?) But I used to get bored, and then I’d twirl my walker like a dance partner and dent the wall, or I’d twirl the roll of paper and make an impressive pile of softness on the floor. So that Mom-and-Dad pair bought a TV and mounted it on the wall in front of my toilet. Since it arrived, I get to watch Shaun the Sheep, Masha and the Bear, and other stuff they think I’ll like. I can’t speak words, so I can’t ask for SpongeBob directly. At least the TV relieves the boredom of the toilet.
Dad’s turn now in the morning routine. In greeting, he squeezes the top of my head with a large hand. I like that. I try to hug him but he makes me wait until I’m off the toilet. Once I’m up and partly dressed he squeezes me hard and I hug him harder. Then we’re off to deposit me in my recliner chair next to my bed.
I have this secret wish that they’ll both forget the toothbrush today. Mom forgets a lot but Dad usually remembers. Here it comes…! Aaaghhh — kewww — gaaaack!! Mow my mouff if full off faliva and I can’t fwallow!
Well, I do fwallow a trickle of it after a while but I hate it. What is that for, anyway? Next comes breakfast — hooray! I pull up my shirt to expose my G-tube. It’s always the same old gooey slurry that gets poured into the tube, with glops of additives, then portions of what they call “meds” followed by slops of water — (will these people ever come fully awake?) — and now I can relax and watch excruciatingly boring ads for Nutri-System and Humana on the big TV across from my chair.
Mom is sitting at the table in my room now, scribbling in her book — a big binder. She snaps it open and closed, open and closed. She scrawls in tiny boxes on lots of pages. I judge my timing and then I sneeze, just to jump her, and I spray my mouthful of foamy saliva. I can tell she’s impressed by the speed of her response, and I grin inwardly as she goes into action to save the folded clothes in the laundry basket in front of me.
Dad comes back with his plate of toast, meets my high-five, and sits on my unmade bed. I high-five at him again and again so he can’t eat. He calls me Buster Keaton. I know my name; it’s Sam. Maybe “Buster Keaton” means “I forgot your name.”
After toast he walks me to my shower. When Dad does the shower he sings his two favorite songs: Old Man River and Ghost Riders in the Sky. He also likes Cool Water and The Windmills of Your Mind. That last one really describes my mind, but I can’t tell him, so I try to hug him. He doesn’t want a wet hug. I guess these are also my favorite songs, because no one ever sings me any other ones. But you’d think he’d learn something else.
Usually it’s Mom who does the next set of rituals. She sprays my armpits with Holy Odor, makes precise designs in my hair with incantations, and then smears gel on my face and scrapes it off. I don’t know what this all does for them, from the tooth brushing to the face routine, but they can’t live without it. (The feeding I understand because it feels good to me. The rest makes them happy, so I don’t resist. It’s loving, and I get a lot of attention, and I get to slap the water in the sink while mom drives her toy snowmobile or whatever it is around on my face.) Finally someone pulls clothes over me and I can sit down again. Let the day begin!
Written by David
MY WORLD BY SAM
After my morning rituals, Adria comes in the daytime and hangs out with me. I realize it’s her job, so I try to brighten her day. We go places together, but almost every day she stays home with me for a while and makes me work, work, work. Adria makes me walk a lot. Walking frightens me, and I say so; that is, I groan my loudest when I’m supposed to be walking. She puts a “weight vest” on me and then walks me in circles in my room. I hold onto my walker, wearing that eight-pound vest, and shuffle slowly in a circle. I think: “Does this entertain you? How about you wear this vest and march around for me?”
A couple of times, when I’ve been on my feet, the floor has suddenly come up from behind and smacked me in the back. I have broken my ribs and had a lot of bruises. Since that happened, Adria or Mom or Dad walks behind me with a hand on my back. Dad says: “Go ahead, try to fall. I won’t let you fall.” They have all caught me at one time or another, so I know I’m safe. If someone isn’t right behind me when I’m standing, I just kneel at my walker, then sit and wait.
I fall because I’m a “Jumping Frenchman of Maine.” You can look that one up. My mom’s French Canadian grandmother ran sporting camps in Greenville, Maine. That’s where “jumping Frenchman” syndrome apparently originated. It is related to hyperekplexia, but don’t ask me to spell that. Either way, it’s an exaggerated startle reflex. Surprise one of my senses with a sudden change and I jump out of my skin, as my mom says. All it takes is a flash of light, a sudden movement off to my side, a ‘pop’ sound from another room, or an unexpected touch, and I throw out my arms and legs. Gravity decides what happens next. It is no fun.
About this walking thing. When people come up to me on their own two feet, I think: How do they do that? I could use about four more legs — or maybe not — where would I put them all when I’m in the car, or in bed? How would I put on my pants?
Adria also takes me all over the place in her Ram 2500 monster truck. I can step up into her pickup, or Dad’s truck too, by myself if I can hold onto someone’s shoulder so I won’t fall. Then Adria and I go to my meeting or to my job. On Mondays there is a SUFU meeting — Speaking Up For Us. Since I can’t speak, the president sometimes passes me the gavel so I can pound the table.
I take my job seriously. Two days a week I ‘m the Social Director at Meals-for-Me at lunchtime. Since I’m 100% tube-fed on a liquid diet, nobody is worried that I’ll eat all the cookies or take the last piece of meatloaf. My job is to sit beside one of the old ladies, a different one each time, (they take turns), and hold her hand. They tell me I’m handsome and give me hugs. Old ladies are fluffy, and so I like their hugs.
I have a friend, Curtis, who lives in town — a tall, happy fellow, and Adria sometimes takes me there. I usually see Penny when I’m there, Cleo too, and he has other friends who gather at his place, too. Some days we go to McDonald’s for lunch, or to the town beach for a picnic in the summertime. I am lucky to live in Lincoln, Maine, a small town where almost everyone knows me and is my friend.
When I’m outdoors walking, or in a big store like Walmart or Marden’s, I usually enjoy myself and “hoot it up” as people say. They can try to shush me, but I can’t curb my enthusiasm. Our town is built on the shore of a lake, and there is a park beside the lake, with a playground and a beach. When we go there, or to a basketball game or a track meet, I can hoot a lot and no one cares. That is great!
When I come home after a long day of walking and hooting and hugging, I just like to curl up in my big recliner chair and see what’s going on in the house.
I have been part of a family for as long as I can remember. Same Mom and Dad. Sisters who have always been around, although I see them less often since they grew up. Other people come for a time and then leave. I miss them. Before Adria, there was Tonya, for instance. When I see someone after a long time, who used to be part of my world, I get excited. I give them good hugs.
I’m still surrounded by sisters, though. At least four of them. They’re definitely adults now. Most of them used to be older than I am, but I’m 27 now and maybe I’m catching up. I don’t know how long it takes to become an adult, but I’m waiting to see. Then again, maybe only some people get to be adults and maybe some of us have a different role to play.
I’m also surrounded by nieces — and one lone nephew, Carter. Just when I think I know everyone in the family, one of my sisters brings in a new baby. They don’t stay babies for long, though. Some of those babies can already walk and, wow, can they talk! Maybe that’s a girl thing. I don’t walk well and I don’t talk yet either. Maybe that’s a guy thing. How do I ask Dad or Carter about that? Dad’s clumsy so maybe he’s still learning to walk, and he doesn’t talk much, but he can when he has to.
My family’s house is always busy. Besides Adria and my sisters and nieces coming and going, there’s my grandfather who lives here, and there are dogs. There used to be two little pugs. Then one dog went to be cremated and I haven’t seen him since. (If they ever offer me a trip to be cremated, I think I’ll turn it down.) After that, there was one little black pug, who has a hard time moving and who coughs all the time. Then, this spring, a new black dog suddenly joined the family. About two months ago she was the size of the old pug. Now she is as big as one of the deer in our back yard.
And that’s the story about the inhabitants of my world. It’s a great bunch of friends and a big, happy family.
