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Thursday, August 19, 2004

A Place To Play

By Kathy Louise Schuit
Mountain View Telegraph
    Caring for one child with severe physical and mental disabilities is not for the faint of heart. Managing the daily needs of three such children at once surely warrants a special throne in heaven.
    Gary and Jane Smethurst have more than earned that place.
    Together, they not only care for the extraordinary physical needs of their adopted children, they face each child's distorted life and the inevitability of death individually and head on, and they try to create fun.
    As often as possible, the Albuquerque family spends time at the small house in Tajique near Fourth of July Canyon that was originally planned as Gary and Jane's retirement home.
    Instead of building the house for their old age, however, they built it to accommodate children with special medical needs and their equally important need to play.
    Working closely with Preferred Building Systems of Albuquerque, the Smethursts created a small yet surprisingly spacious home with enough room for wheelchairs, walkers and the other necessities of raising physically challenged children.
    They also created a playground.
    Like a fortress or a fairyland, depending upon the bent of your imagination, garage doors along both lengths can completely open the garage to the fresh air and the forest. The children get to experience being outside, but delicate, rarely exposed or medically sensitive skin is protected from the sun by the garage roof.
    "It's kind of a perfect compromise we think," said Gary.
    After completing the house, Preferred Building donated a redwood swing set with a slide and play fort.
   
Memorial tribute
    In February, the Smethursts lost a child. Alexis, who they called Lexi, had only been with them for two years, but they were undoubtedly the best years of her short life.
    Born to a cocaine-addicted mother who paid little attention to her, Lexi contracted spinal meningitis at 3 weeks old. She lost her sight and three limbs. Her mother abandoned her at the hospital.
    The rest of Lexi's life before coming to the Smethursts was spent moving from foster home to foster home, Gary said.
    Living with lots of different people, many of whom didn't keep her long enough to notice physical changes, worsened her medical conditions and resulted in many additional problems including severe scoliosis— which eventually caused complications that led to her death.
    When the Smethursts adopted Lexi at age 11, she cried when she was picked up, cried when she was put down, disliked people and preferred not to be touched, said Gary.
    Even though Gary said it's unlikely she was able to understand the concept of having been adopted, Lexi slowly began to change and to "relax."
    She even went to public school in Albuquerque, where she so touched and inspired her classmates that, following her death, they dedicated the remainder of the school year to her, he said.
    "It was a hard passing, but Lexi really touched a lot of people's lives," said Gary. "People got real inspired and interested because of Lexi."
    At the time of her death, many of those people donated money— a total of $1,200— to help the Smethursts care for Ashton and Joseph, their remaining adopted children, or to create a memorial for Lexi.
    The Smethursts decided to do both and put the money into the playground at the Tajique house.
    For $800, they bought a wheelchair-accessible swing. The chair rolls onto a platform by way of ramps— which then fold up and become wheel stops to prevent rolling— and is secured with safety chains like those found on carnival rides.
    And what a ride it is for children who have never experienced the lightness and thrill of flying through the air with the wind in their face.
   
New experiences
    Ashton, the Smethursts' first adopted child, was the first to try out the swing.
    The victim of a near-drowning when he was just a year old, Ashton is perhaps the most medically fragile of the Smethurst children.
    "Ashton's gains are very slow," Gary said.
    Doctors didn't expect the small, severely brain-damaged boy to live three weeks after being released from the hospital.
    "He's been with us five-and-a-half years," said Gary.
    To the casual observer, Ashton— unmoving and with no changes in facial expression— seems oblivious to his ride on the swing. But Gary assures that there's a lot going on inside Ashton.
    He enjoys himself and he's a fighter, Gary said, telling of Ashton's struggles with two serious illnesses and his fierce desire to be released from the hospital.
    "That tells me that he wants to live," Gary said.
    The natural parents of four grown children— who support their parents' choice to adopt children with special needs— the Smethursts decided some years ago to open their home to foster children. As children came and went, Gary and Jane found it too difficult to endure the constant tearing apart of bonds that had been formed.
    So they started looking for children nobody wanted.
    Ashton was first and then came Lexi. Two years ago they adopted Joey, a 9-year-old boy born with hydrocephalus— a condition of too much fluid on the brain.
    Throughout most of his life, Joey was left to lie on the floor where he was tortured and abused by his older siblings, said Gary.
    Once rescued from the horrific conditions, Joey's doctors performed multiple operations on his feet— which had grown at odd angles parallel to the floor when lying down— but never really expected him to walk.
    Hours and hours of therapy, many of them spent on the Tajique playground, now have Joey nearly walking.
   
Reaching out
    After seeing what the playground, the change of scene from "the same four walls" of the house and being outdoors have done for their own children, the Smethursts decided to open the playground to others.
    "It's pretty hard to take a kid in a wheelchair to a (regular) playground," Gary said.
    Several physical therapists who work with medically fragile children and the New Mexico School for the Visually Handicapped have already expressed an interest in field trips to the Smethursts' playground. And the Smethursts hope to expand to accommodate them.
    Easier access to the swing and a Braille trail are just a few of the things Gary and Jane like to dream about adding.
    "That's part of the long, long term plan," said Gary.
    The Smethursts say they are also now ready to share the playground with other families coping with the special needs of a physically or mentally challenged child. To contact them for information, call Gary at 247-0192.
    In October, the Smethursts intend to adopt another child. They have their eye on a young girl from New York state who was born a victim of fetal alcohol syndrome. She meets all their criteria— nobody wants her and she'll fit into their family perfectly.