Family copes with lasting effects of food poisoning

1/23/2009 9:35:02 PM

Source of Article:  http://news.postbulletin.com/newsmanager/templates/localnews_story.asp?z=10&a=381721

By Jeff Hansel
Post-Bulletin, Rochester MN 

It's easy to imagine why neither Sharon Smith nor her son, Will, feel comfortable leaving Will's sister alone.

Stephanie Smith, 21, became acutely ill more than a year ago after eating a hamburger tainted with bacteria called Escherichia coli.

Seizures coupled with many complications caused brain injury and paralysis.

But through her own determination, and the determination of her family, Stephanie has regained the ability to eat, has a social life and maintains a schedule of three hours of therapy daily.

She has taken physical, occupational and speech therapy, along with therapy to counteract the effects of the brain injury. She keeps a positive attitude, even though she misses teaching dance, her great love prior to getting sick.

"I cry in the shower. I get really angry sometimes, and I try and accept it, and I always ask, 'Why me?,'" she said. But she finds the ability to smile and stay focused on the future, not the past.

Sharon doesn't want to leave her daughter under someone else's care. That's because, to properly care for someone with paralysis, you've got to understand that you can't feel what's happening to that person's legs.

"Showers take a long time, because you have to be careful," Sharon said. She quickly learned it's easy to bump one of Stephanie's legs.

"I had no idea until I started lifting Steph. I hurt her, like on the legs of the wheelchair," Sharon said. "I really am uncomfortable with other people, because you really have to learn everything. It's very difficult, I think, (to not) hurt her or drop her, or forget the wheelchair brake."

Do that, and the chair slides quickly out from behind while Sharon or Will stands awkwardly trying to prevent Stephanie from falling backward.

Care involves commitment

The family's new way of life requires an unspoken commitment from all involved -- tenderness from Stephanie's aunt, brother and mom, and a concerted effort to keep a positive mental attitude from Stephanie herself.

Her typical day now is different than it was before she got sick.

"I wake up. Somebody's there to take care of me," she said. She goes through three hours of therapy daily before returning home with her brother.

"Then I watch a bunch of TV, because that's my only alone time," she said.

"Stephanie really likes her alone time, and I do too," Sharon said. So she and Will try to make sure Stephanie can have periods when no one else is in the room. But they always make sure someone is nearby, just in case.

It helps to have a van with a ramp. But for Stephanie, sitting on a car seat is more comfortable. So Will and his mother try to take the car when the trip will be a long one.

That means folding the wheelchair and putting it in the trunk after lifting Stephanie into the front seat. And a reverse process going in, and then the process is repeated when coming home.

"I'm sad when I see Stephanie suffer. But I'm really happy when I see how good Steph has taken it," Sharon said. "I don't look at it as a really bad thing -- because she's alive."

Stephanie is grateful for her family's care.

"I think they're amazing. The fact that my brother moved home for me, that was just really strange, and really amazing," she said.

Will Smith moved back to Minnesota from Arizona.

"You can never appreciate your kids enough, ever," Sharon said.

Watching dance team difficult

Stephanie recently got to watch her dance group compete, kids she used to teach.

"My team took first place. It was really, really hard because I wasn't part of it," she said. But she beams when she notes that the kids took first place.

She had been kind of a workaholic before she got sick. She taught dance at Just for Kix, worked at Orange Julius and decorated cakes at Dairy Queen, where her mother still works.

"Our whole life is different. I don't go anywhere, because I don't want to leave Steph alone," Sharon said, repeating almost word-for-word Will's wish that someone is always there for his sister.

The brain injury has changed some of the ways Stephanie responds, although her personality still shines through. It can be frustrating for her, because she says things that, to others, seem humorous.

"I don't think I'm funny, but they do," she says, looking over at her mom and brother.

Her dog Lola, a shih tzu, comforts her. And Will has a pit bull -- but the shih tzu is the "alpha dog."

"I hang out with my cousin, or my cousin and my boyfriend and his family," Stephanie says.

Their carefree, joyous attitude could make their life seem misleadingly simple if it weren't for the process of getting in and out of the car. But their life at home is much more complicated.

"It's hard," Will said. "We pretty much got a schedule. I mean, mom's got work."

Sharon's work schedule specifies how much time she has left over for her daughter. Will stays with Stephanie when their mom is away. With help from Sharon's sister, all of Stephanie's needs must be met, whether it's getting to therapy, heading to Rochester for medical checkups at Saint Marys Hospital, bathing or washing bedding and the mattress every day to keep Stephanie safe from infection.

Some positive changes

Even in Rochester, the Smiths ran into problems. Stephanie needed to change clothes, but her mom and brother couldn't find a place where she could do that, because there was no place for an adult to lie flat.

"We ended up laying her on the floor," Sharon said.

"I was on the floor. It's a good thing I can roll," Stephanie said.

Sharon thinks she changed for the better after her daughter's illness.

"I deal with problems and conflicts and kids and customers," Sharon said. Yet all of those issues can seem trivial compared with being responsible for an adult child's needs.

Stephanie, too, is positive about what happened.

"I probably have more of a life now than I did then," Stephanie said. "I just want my miracle. I just want to wake up and walk."

But, Sharon says that, already, "she gave me so many miracles."

"I have the best family in the world. Family is the best thing when you go through something traumatic," Stephanie said. "My whole community of Cold Spring has been great to me."

Community members raised money to help.

"I don't really think we could have kept our house without them during the really tough times," Sharon said.

Simple things become complex

Sharon says she's grateful to have both Stephanie and Will in her life.

"He was man enough to come home and help me with all of this. He's given up a lot. More than I know; more than anybody will probably ever know," Sharon said. Will looks at his sister with newfound appreciation for the positives in life.

"It's hard to complain about anything when you're having a bad day," Will says. "She doesn't get down about anything."

"I don't think you can appreciate things enough, with what we went through," Sharon said.

"My dancers have been a big part of helping me through it," Stephanie said. Dancer instructors have told her she's missed by the dancers.

"It makes me happy, but sad at the same time," she said.

But despite the sacrifices, the Smith family remains grateful that Stephanie survived and has a high quality of life because of the care from her mom, aunt and brother. Sharon can't get over the feeling of great fortune.

"I've been given the greatest gift of my daughter, and of course my son," she said.

 

 

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