SURROUNDED BY JOY, ENTHUSIASM, HUMOR, LOVE, AND MANY, MANY ANGELS

The St. Jude Times -- Fall 1997, Page 3, By Aileen Murphy

May 21, 1997

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, Jason's smile.

--Aileen Murphy

 


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