Wednesday is the first day I helped
the Rookers with Jason, their 10 year old son who suffered a brain
injury one year ago in an accident. The therapy is called patterning,
and is intended to start as an infant starts, learning to move,
crawl, creep, and walk, going through the same stages. The program
requires people to make the movements for Jason, each person responsible
for one limb, and one person at his head, turning it from side to
side as the rest of us simulate his crawling. So, the Rookers have
asked for volunteers, a team of five people (four others and one
family member), three times a day (at 9, 1, and 5). The patterning
goes in six 5-minute increments, with 10 minute breaks in between.
So, one volunteer session lasts around one and a half to two hours.
Inside their house, there is a large
table on the ground floor that a friend built and the Rookers upholstered
themselves for Jason's exercise and therapy. On the floor above,
in the living room, there is a large wooden slide built by that
same friend of the family. In the backyard, there is a large round
trampoline, which the Rookers traded for a Nintendo game, and only
became aware of the benefits for Jason afterwards.
During the ten-minute breaks yesterday,
Jason was carried out to the trampoline to get bounced around a
bit, which makes him smile a lot, and later upstairs to the slide,
where he was placed at the top, and encouraged to slide down by
wiggling himself a little. The running part of the slide is made
of polished board, so it is not a fast slide, but it does not slow
him up if he were to want to get down very quickly.
Jason is a beautiful boy with dark
brown hair which right now is in sort of a long crew cut. He has
enormous brown eyes, and perfect creamy-colored skin. The people
on my team all know him very well, except for me. They keep a running
conversation going at all times, one person especially, in a fabulous
southern drawl, teasing him very lovingly, about everything from
being too strong for us to move him, to loving blondes, to programming
the timer to make his sessions shorter, to gaseous bodily functions.
Jason smiles hugely, and clearly loves these close friends of the
family. When he cries or complains, his feelings are not glossed
over -- his mother Fran pays close attention to his needs, and makes
sure that he gets some relief if he is in pain from his position,
his stomach tube, or whatever. At a frustrating moment yesterday,
Fran looked deep into his face and just wrapped herself around his
whole head when he was crying.
As far as real bodily functions,
when it is time to change his diaper, all but she and their close
friend leave the room for his privacy. Fran checks after each session
to see if he needs a change. She will not let him sit even for a
minute in a wet or soiled diaper. His dignity is always respected
and maintained. They have remodeled a room in their home to function
exactly like a hospital room. There is practically no doorway between
his bedroom and the bathroom. The shower is an enormous open block
all tiled in, and there is a shower bed that can be wheeled in and
out. His room also has lots of pictures and a very warm, loving
atmosphere. There is a collage on the door that may have been in
his hospital room, with many of his "favorites" on it,
like pictures of baseball, people, places, food, etc. One of the
pictures is of him before the accident. He has longer hair in a
bowl cut, and his resemblance to his sisters is acute.
Jason needs to maintain a certain
weight, and mostly eats mashed potatoes, and various soft things.
He eats by mouth three meals a day, and in the middle of the night,
Fran feeds him some formula through his stomach tube while he is
sleeping. His favorite thing to eat is chocolate ice cream. Apparently
at the hospital that is the first thing that he ate, and the next
day when someone came in with some vanilla, it was rejected outright
until his grandfather noted the misunderstanding, and some chocolate
replaced the vanilla, and was eaten heartily.
The work itself is amazingly physical.
I am sore today, as I was already while driving home yesterday.
Sometimes, Jason's limbs are pretty stiff, and the struggle to pull
a leg or arm into position is intense. When all is going more smoothly,
it is still hard on the back and arms. When not exercising, being
stretched this way and that, Jason's hands curl in a little, but
can be opened and held. When turned on his back, Jason will stiffen
up and curl upwards into an arc, with both legs straight and his
tummy up. There are people coming to help with his care all the
time: a part-time nurse in the evenings, so that Fran and Greg can
get dinner and have some time with their daughters, and there are
regular visits from a physical therapist and an occupational therapist.
This family is beautiful in the
way that they have responded to this crisis. Their home is large,
on a lake, with an enormous lawn down to the water. They have a
garden, some flowers in pots that Fran is waiting to get around
to planting, some tomatoes that Greg planted yesterday. Normal and
mundane things are combined with the care of Jason, which has become
their normal life.
Now it is early October. Jason died
last month, and memories of my visits every other Wednesday are
a collage: singing songs, hearing recipes for guacamole and sweet
potato pie, watching "Bill Nye, The Science Guy" during
breaks, the story about the picture of Greg's backside, meeting
Jason's grandparents Frank and Mary, the megaphone, the Cheerios,
the beetle, the turtle and the turtle poop on the slide, the fart
jar, the pictures of Michael Jordan, Frostys from Wendy's, the squeeze
of Jason's hand, Larry Amy's birthday beer, the "difficult"
left leg, cigarette breaks, Jason's soft hair, the vocabulary words,
Greg fishing and reading Dilbert, Jason's smile, Jason's smile,