Mother, Child Share Fight With a Crippler That Haunts Family

Judy Parker longed to study ballet as a child, but it was her sister who got the toe shoes. Judy, who was sometimes called “limpy leg” by her classmates, always knew this dream would never be within her reach. And always regretted it.

So when her daughter, Claire, was born five years ago, Judy was thrilled that someday she might see her little girl in toe shoes, gracefully performing the pirouettes she had never been able to do herself.

But that, Parker now knows, isn’t going to happen, either.

Toe shoes are off limits to Claire for the same reason her mother was unable to wear them: juvenile arthritis.

When Parker, who has been fighting the disease since she was a toddler, learned nearly three years ago that her daughter has it too, she was forced to examine the motivation behind some of her hopes for Claire.

“Mentally, I packed up the toe shoes,” says the 35-year-old Mission Viejo resident. “I realized this was something I wanted her to do because I couldn’t. I learned you can’t live vicariously through your children.”

At the same time, she realized that she could show Claire how to prevent a chronic illness from becoming an excuse for giving up dreams that are attainable. So Parker--who has always seen the word “can’t” as a green light--made up her mind to pass on to Claire her own knack for turning obstacles into challenges.

She feels a special closeness to her daughter because both have had to face a disease in childhood that is usually associated with the vicissitudes of growing old.

“There’s a bond because I know what she’s going through--but that makes it harder, too,” Parker says.

She’s glad to see that Claire has inherited the feistiness that helped Parker keep up with her siblings and peers as a child in spite of illness. Sometimes, Parker admits, she allows her assertive, strong-willed daughter to win challenges of authority because she doesn’t want to dampen her spirit.

“She’s going to need it if her arthritis gets worse,” Parker says during a two-hour interview that Claire frequently interrupts with pleas to be included in the questioning.

Finally given a turn to tell the reporter whether her friends notice her arthritis, she says: “No, because I run too much, and I walk a lot--write that down.”

Then she takes off her shoe to show her visitor a device she wears to support the ankle that swells when her arthritis flares up. Sometimes, it hurts enough to cause her to limp, although her mother says she never complains about the pain.

Claire is one of about 200,000 American children who have some form of juvenile arthritis, which can strike as early as infancy and last a lifetime, according to the Arthritis Foundation.

The disease may show up with inflammation in only one joint, as in Claire’s case, or in many. Often, it is a mild condition that causes bouts of joint stiffness and pain and eventually goes into remission, leaving no serious permanent disability. But it can interfere with normal growth, require surgery to replace damaged joints and, in the worst cases, cause severe crippling.

The course of the disease is unpredictable: symptoms can disappear for months--or years--and then return, and the pain can be mild one day, severe the next.

Although there is no known cause or cure for juvenile arthritis, the disease often can be controlled and physical disability in later years prevented with early diagnosis and a treatment regimen including medication, rest, a balanced diet and exercise.

Parker would add one more remedy to that list: spunk.

That was vital to her as she was growing up with arthritis because her parents, with five children to raise, had little time to coddle her.

She was 14 months old when the arthritis was diagnosed. She had been having low-grade fevers and had stopped walking when her parents took her to the doctor, fearing she had polio.

Because doctors at that time tended to recommend bed rest rather than exercise for arthritis patients, she spent three months confined to her crib.

After that, however, she was able--with the help of medication that relieved pain and swelling--to remain active, although she was always the last one picked for athletic teams and she couldn’t dance or do gymnastics or sit “frog style” with her friends.

She says she used to show off the “big, fat knee” that, along with the inflammation in her ankles, caused her to limp. The arthritis was limited to those joints until she was 10, when it began to spread.

First she suffered a complication that left her legally blind in one eye, and gradually she began to experience pain and swelling in her hips, elbows, hands, wrists and fingers.

Although she has been through periods of remission, she still has painful flare-ups, and she’s been through foot surgery and a hip replacement since Claire was born. She figures she’ll be taking medication indefinitely to keep the disease in check.

“I’m not that crippled, but it hasn’t gone away. It’s been insidious,” says Parker, who has learned to do household chores in ways that place as little stress as possible on her joints.

She was in remission and thought she’d put the disease behind her when she and her husband, Steven, decided to start a family. They went through genetic counseling and were told it was highly unlikely that she would pass on arthritis to her children.

Her son, Travis, who is 10, has never shown any signs of the disease. And Claire’s initial symptoms--tiring more easily and limping occasionally--were so subtle that Parker ignored them at first.

One day when she lifted 2-year-old Claire out of the high chair and set her down, the little girl said, “My arthritis hurts.”

“I thought, ‘How cute, she’s mimicking me,’ ” Parker recalls. “Six months later (it) was diagnosed.”

Parker was devastated. In tears, she told the doctor, “This wasn’t supposed to happen!”

“I worried about everything else, but not that either of my children would have juvenile arthritis,” she says. “I figured I’d had it, so why would lightning strike twice?”

When Claire was 4, Parker says, “I realized I had to step back and let her do more for herself.”

She taught Claire to try everything at least three times before asking for help.

At the same time, she noticed that in preschool, “there was a tendency sometimes to not expect as much of Claire” because of her arthritis. So when Claire started kindergarten recently, Parker didn’t mention the illness to the teacher.

“Sometimes kids with physical disabilities are treated as if they have intellectual disabilities,” she explains. “I want the school to see how capable Claire is before they decide what she cannot do.”

Parker also wants Claire to see how capable she is--as a career woman as well as a homemaker. So she has started taking classes in real estate appraisal and plans to get her license, although she admits she’s worried about how she’ll be perceived in the job market.

“I may have to make other people understand that this disease has affected my joints--not my brain,” she says.

She’s also working with the Arthritis Foundation to increase awareness that arthritis is not an “old folks disease with an occasional achy joint.” (She’s among the volunteers planning Juvenile Arthritis Family Day, an educational event to be held Oct. 27 at the Carson Community Center in Carson. For information, call (213) 938-6111.)

Through her work with the Arthritis Foundation, Parker hopes to persuade others that children with arthritis should be raised the way she was and the way she’s bringing up Claire--with a sense of unlimited possibilities.

“They need help and understanding, not to be pitied and taken care of,” she says.