A Place for Siblings to Share Their Lot

Mary Amoroso
13 January 2002
The Record, Bergen County, N.J

It is a fact of life that parents of a chronically ill child need to devote the bulk of their emotional, physical, and financial resources to the care and development of that child.

It creates a skewed dynamic when there are other siblings in the family. Those siblings either learn to accept it (and not overburden Mom and Dad with their less exotic problems) or they act out, to try to reclaim some attention.

Karen Bernstein has firsthand knowledge of the situation.

"It started a year ago last summer, but for months we didn't know what was going on," the Ramsey mother said. "My 12-year-old started having horrendous pains in his knees, his elbows, his knuckles, his jaw.

The doctor first said it was growing pains. But then he couldn't walk.

My husband and I were literally carrying him up and down stairs.

"My husband got on the phone with everybody he knew from college, from business. We were researching on the Internet."

In October they connected with a pediatric rheumatologist, who gave them a diagnosis: spondyloarothropathy, a form of arthritis.

But meanwhile, during this chaotic time of pain, disability, and frenzied investigation, their daughter Rebecca was starting freshman year of high school.

And, said her mother, "We all know what a wonderfully tough time that is."

Being a good girl, Rebecca didn't want to worry her parents at this difficult time. But she was having her own problems adjusting to a new school.

"I was just trying to work things out getting through freshman year," Rebecca said. "Maybe I just needed some time and maybe some attention from my parents."

Being a sensible girl, Rebecca went to her guidance counselor and the school's crisis intervention counselor. They urged her to talk to her parents, and she did.

"Things got a whole lot better," Rebecca said.

But Rebecca had been on the Internet herself. She was very impressed by a humorous and chatty site called "CreakyJoints" (www.creakyjoints.com), started by a college student with the aim of linking arthritis sufferers to resources, information, and connections with other sufferers. But she couldn't find a site that spoke to the siblings of youngsters with chronic illnesses.

And so, just a few months ago, she talked to her parents about starting a siblings site.

"My parents are the ultimate grandparents, and they thought it was a great idea," said Rebecca's mother. "Rebecca said to them, Instead of a Hanukkah present, would you give me some money to start my Web site? Meanwhile, I had a Web publisher program and, using that, Rebecca did it. She created her Web site."

The site is www.asiblingssite.com, which bills itself as "A Site for Kids by a Kid." Rebecca plans to do a monthly column, and so will her mom. The site also talks about how you can help your parents fight for the rights of a chronically ill sibling in school.

The site offers tips for getting to sporting events, museums, and vacations with a chronically ill sibling: "Having a chronically ill brother or sister can have an effect on vacations, school, and everyday activities. For example, with arthritis, before doing anything you have to worry about the weather, how many stairs there will be, handicapped parking availability, are wheelchairs available if needed, how far is it from home just in case they start to feel really sick, and this list goes on."

There's also a bulletin board for youngsters to post messages about family life with a chronic illness.

One young respondent wrote: "Sometimes I am so jealous of my sister. I don't want to be sick, and I really don't want her to be, but she gets so much attention, and it just doesn't seem fair. My parents have to spend so much time taking her to doctors. I try to be understanding when they can't drive me somewhere or when I have to cancel my plans, but it just doesn't seem fair. I don't feel as if I can tell them how I'm feeling, because I think they will think that I am not trying to understand the big picture. I just want them to know that I need some time, too."

Said Rebecca: "What I want this site to offer is a feeling of community, of people who completely understand what you're goingthrough. You can help each other and give each other advice."