Sunday, January 4, 2009

Growing up with disabled parents and doing just fine

From the Modesto Bee in California. The family is pictured in 1990 after Rebeka's birth.

At 8 a.m. on a recent Wednesday you might have spotted Rebeka Willett on the Modesto Junior College campus. She was the 18-year-old in a Raiders T-shirt and jeans, giggling along with her classmates as she practiced arabesques in a dance class. You would have seen a student like any other: sleepy, but learning and enjoying herself.

This isn't the way some people thought Rebeka Willett's life would turn out. She is the child of two parents with disabilities. Her mother, Tammy Willett, has cerebral palsy and uses a wheelchair. She needs help to eat and to do other basic tasks. Rebeka's father, Clarence, 43, is developmentally disabled.

Some questioned whether the couple could raise a child. A public health nurse once told the Willetts to give Rebeka up for adoption. She said Rebeka would never learn to talk because Tammy can't talk.

This year Rebeka more than proved the critics wrong. She graduated – on time – from Grace Davis High School in Modesto. Now she's studying to be a preschool teacher. If Tammy Willett could track down that public health nurse today, she would say, "You didn't think I could do it? Look at us now!"

Tammy, 48, developed cerebral palsy, a disorder of the central nervous system, at age 10. Doctors believe encephalitis – inflammation of the brain – brought on the condition. She fell into a six-week coma. When she woke up, her mind was intact, but her body was held hostage by muscles she no longer could control.

When she was 26, she met Clarence at Modesto's United Cerebral Palsy Association center. Clarence is mildly mentally retarded. He's worked over the years at menial jobs but doesn't work now.

The two married in 1989. Tammy's pregnancy a year later was a "surprise miracle," Tammy said in an e-mail interview. Rebeka was delivered by Caesarean section in May 1990, a healthy, normal baby.

For Rebeka, there was no "aha" moment when she suddenly realized Tammy wasn't like other mothers. She said she's never thought of her mom in those terms.

When she was little, she sometimes would look at other kids and their parents and feel left out. But ask Rebeka how her life would be different without disabled parents and she says: "I would probably be like any other teenager. I'd still be immature right now."

She's learned a lot from her mom: Be independent. Take care of yourself first so you can take care of others.

"She's taught me how to express myself for who I am and not try to be somebody else," Rebeka said. "Even though she has her disability, she's herself 24-7. She doesn't try to be somebody else and I idolize that a lot."

Along with her grandparents, her father and other relatives, Rebeka has helped care for her mother since she was a child. Now she is paid for the work through a county program that provides in-home care to disabled people. She gets her paycheck, about $260, near the end of the month. It comes in handy because the family's main income is $1,524 in government aid for the disabled.

Rebeka provides what's called "respite care," relieving Clarence when he needs a break. On recent afternoon, for example, Clarence went to the library, leaving Rebeka and Tammy at home.

The two usually communicate in a sort of telepathic shorthand. "Most of the time I can read her mind," Rebeka said. "I guess it's just a bond that we have. She'll start to spell something and I'll know exactly what she's trying to say."

Rebeka doesn't consider the care she provides for her mom work. When she was younger, it sometimes felt like a burden. But now she sees it as "little stuff," a routine part of the family's daily life.

Despite Tammy's weakened body, her mind remains strong. Her family knows her as an intelligent, lighthearted woman whose personality you can glimpse in her e-mails, or in poetry she's written. Her favorite is "Handicapped Persons – We Are People Too."

It includes the verse, "We may walk funny, we may talk funny. There may be some things we can't do, but there are a lot of things we can do. Sometimes, better than you can."

Now that she's in college, Rebeka says she can picture moving out of her parents' house. But she's in no rush.

Her thoughts recently were on her favorite holiday, Christmas. She bought presents for Tammy and Clarence: Tweety Bird pajamas for her mom, and for her dad, some DVDs, including his favorite movie, "Driving Miss Daisy."

Rebeka's presents from her parents included a Raiders pillow, a Tinkerbell clock and a computer printer.

Recently, Rebeka still was working on a special gift for her parents – a PowerPoint presentation of old family snapshots. In the presentation, Rebeka wants to tell Tammy that she's a great mom and she's been a big influence on her life.

"I feel that she's the most wonderful, smartest woman that I've ever known in my life," Rebeka said. "I wouldn't trade her for any other mother, or any other person in the world."