Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, July 27, 1995 TAG: 9507270029
SECTION: EXTRA PAGE: 1 EDITION: METRO
SOURCE:
DATELINE: LEXINGTON LENGTH: Long
Now the 27-year-old mother concentrates on the mundane.
She walks Noah, 3, and Jed, almost 2, around the woods just to look at bugs.
She tries to make a special event out of dipping their toes in the creek.
Her father bought the kids dogs - pound puppies named after Cinderella and Snow White - so they can experience all the things little boys do with dogs: walking them by the leash, rolling in the yard, playing fetch with a stick.
Think about all the hopes, emotions and dreams you begin to invest in your children from the moment your home-pregnancy test turns pink.
Then imagine those dreams evaporating before your child even learns to walk.
Alva Smith calls them the ``little pictures in your head.''
She's tried, one by one, to wipe them from her imagination. But, hard-wired for mothering as she is, she can't give them up.
It started on Noah's second birthday, when a concerned pediatrician noticed the boy wasn't walking up to speed and recommended physical therapy. After six months of rehabilitation and little improvement, a specialist ordered more tests.
The prognosis was crueler than Alva and Chris Smith had ever dreamed.
Stricken by a rare form of muscular dystrophy, Noah will never run as fast or swing as high as other kids his age. At age 5, steroids to strengthen his muscles will be his only chance for walking at all.
By age 9, he'll be in a wheelchair, his muscles worn out entirely.
Imagine all that, and then multiply by two.
Just before Christmas last year, a genetic screening showed Noah's little brother, Jed, can expect the same cruel future.
At first, Alva and Chris Smith mourned their dreams as surely as if someone had died. ``You know how you see these little pictures in your head of your children's future and your role in it?'' she explains. ``All that had to change.''
Sometimes Chris would come home from his job at Schewel Furniture, hold the kids on his lap and cry.
``At first, it was the little things that would set me off,'' Alva says. ``I'd watch Noah on the floor, and he'd be trying to get up off the floor, and I'd burst into tears.''
Realizing one-day-at-a-time was the only way to cope, they've begun focusing on the little things. Alva recently quit her evening job at Wal-Mart because she missed putting her boys to bed.
But the future hangs there heavily. One time Noah saw a public-TV puppet show about handicapped kids. When Alva used the opportunity to say, ``One day you might have to use a wheelchair, too,'' he responded by thinking it was neat.
Another time while she was exercising his Achilles-area muscles, a physical-therapy routine to delay the tightening of his tendons, the 3-year-old complained about the ritual. Alva explained that the looser his muscles remained, the longer he could walk.
``I don't care!'' he screamed. ``I don't want to walk!''
The reminders are the worst, she says. Some well-meaning friends who don't understand the time frame of the disease expect the boys to be sitting at death's door.
Others have responded with church-supper and car-wash fund-raisers. Wal-Mart employees paid a dollar to wear shorts to work one day, with the proceeds going to the boys' trust fund.
And a long-time family friend, Jane Harris, has organized two raffles. One is for a print that artist P. Buckley Moss donated to the cause, and another is for a miniature horse donated by Sandee Garnett of Vinton's Miniature Horse Registry. (Garnett has even promised boarding for the horse for three months and free delivery within a 100-mile radius.)
``It's to allow these children to live as normally as possible - while they're still able to live a life,'' Harris explains.
The money will fund the inevitable needs - like the handicap ramp the Smiths dread having to install at the front of their house.
It will also fund the future that many of us take for granted - the swimming lessons, the zoo visits, the horseback rides, the trip to Disneyworld.
Alva has heard of a young man in the area who has this same form of MD. She wants to visit him - some time, she's not sure when - to see what to expect.
But she's not yet ready to let go of those pictures in her head.
So she thinks of dog-paddle lessons instead of football practice.
Of Mickey Mouse snapshots at Disneyworld instead of prom pictures in front of the fireplace.
She's placing two lives' worth of dreams on the puppy-dog shoulders of Cinderella and Snow White.
Raffle tickets for the miniature horse are on sale at $1 apiece through Saturday at the Rockbridge County Fair. Tickets for the P. Buckley Moss print or the horse can also be purchased by calling Jane Harris at 463-2575.
Donations to the Noah and Jed Smith Fund are accepted at First Union Bank, c/o Ann Conklin, 101 S. Main St., Lexington, Va. 24450.
Beth Macy is a Thursday Extra columnist and feature writer. Her number is 981-3435 or (800) 346-1234, ext. 435.|
by CNB