Share this article

print logo

A FAMILY AFFAIR

Haley wakes up at 5 a.m. and lies in bed until my dad lifts her out at 5:30. He holds her hand and guides her to the chair-lift at the top of the stairs.

The chair-lift slowly descends down the stairs, and then Haley sits on the floor and watches her favorite sing-along movie. She is then hand-fed, dressed and put in her wheelchair. Her school bus, with a special wheelchair-lift, pulls up, and Haley is wheeled into the bus and off to school.

My sister Haley is a victim of Rett Syndrome, a very rare neurological disorder. Haley is completely dependent on other people, and she does not like it any more than anyone else. This is Haley's life. This is my parents' life. This is my life.

It is not easy living with a severely disabled person. In fact, it is hard to sit here and tell all of you about it. Almost every aspect of my home life and life with my family are affected by Haley's disability.

Everywhere in our house you can see tools and machines to help Haley. To get up the stairs, she has the chair-lift. Our van is specially made to carry her and her wheelchair. We have a swing mounted inside our house to calm her down when she is upset or having seizures. She even has a bed specially made for someone who might roll out of bed.

Haley is 11 years old. Because of her disorder, she has a very weak immune system, she cannot talk, she cannot walk by herself, she cannot feed herself, and has almost no balance. However, she is always the life of the household. When she is happy, she is constantly smiling, giggling and laughing. Why? She is happy to be alive, she is happy to be around people, she is happy to be having a good day and she is happy not to be having seizures. All these things mean a lot to Haley. After all, she does not have a lot to be thankful for. It's not easy for her to be like this.

There are a number of things Haley can do. Although she cannot talk, she can understand anything that you tell her. How do we know this? Try telling Haley that she looks very beautiful and see if you don't get a bright, wide grin on her face. We also found out recently that Haley knows her letters and colors without even being taught these things. Haley does get very frustrated though, when she sees kids playing outside and can't join in. She knows all the things she is missing out on.

Haley's problem, Rett Syndrome, is caused by damaged x-chromosomes, and it affects only girls. Male babies born with Rett Syndrome do not survive. Females survive because they have another x-chromosome, which acts as a "back-up copy." It affects one in 10,000 to 23,000 people. Girls with Rett Syndrome develop normally until about age 2, and then regress. At one time, Haley could speak many words, could walk, and use her hands; however, this soon turned into hand-wringing, shaking and unsteady walking.

"People with Rett Syndrome have unsteady walking, shakiness, repetitive hand movements, severely impaired expressive language and loss of purposeful hand skills, and may have other symptoms including seizures, bruxism (grinding teeth during sleep), breathing dysfunctions, abnormal sleep patterns, and scoliosis (curvature of the spine)," according to the International Rett Syndrome Association.

Because Rett Syndrome is so rare, there has been a lack of scientific research on it. Nevertheless, there have been huge breakthroughs in the past few years. Rett Syndrome Support Groups have been trying to make the public more aware of this disorder.

Last year, actress Julia Roberts met a little girl with Rett Syndrome, and was so touched by her that she worked with the Discovery Health Channel to film a documentary called "Silent Angels" to tell the world about this heartbreaking disorder.

Rett's has similar symptoms to autism and cerebral palsy. Because of this, Haley's school, United Cerebral Palsy Children's Center in Cheektowaga, is able to care for her needs. They seem to love Haley and enjoy every moment with her.

My family has not always had good luck with Haley's schools. When we first found out Haley had Rett's, we were living in a suburb of Los Angeles. Because of California's lack of funding for their schools, Haley went to the local public school with a very poor program. Some kids ran around banging their heads on the wall, while others had to be strapped down to a chair. All the noise from the screaming kids drove Haley crazy. It didn't take long to see this was not going to work.

We then moved to northern California, to a town named Fair Oaks, because my parents found a unique private school there that they thought would suit Haley's needs. Haley's school seemed to be going great, and Haley even started speaking a whole sentence once in a while. Then the school wanted to relocate, the teacher stopped working one-on-one with Haley, and things went downhill. Meanwhile, the local public school I went to was dirt-poor. The paint was peeling, things were taught in fourth grade that I had learned in first, and some of the kids couldn't even tell time. Then we moved back to southern California. Haley and I went to different schools, but things did not work out there either.

Which brings us to where we live now -- Grand Island. We moved here in 1998, and things are great here. Grand Island High School is way better than the schools in California. Haley goes to a school with people who really like her. People here seem a lot friendlier, although it's just a bit colder and there is this weird white stuff falling from the sky.

But things still are not fun and games for Haley. And it's not easy for us, either.

"Mom, I'm late for practice!" -- "Hold on Ben, I have to get Haley dressed and put in the car."

"Dad, we're late for ski club!" -- "We are going to be late, Ben. Haley is having seizures."

Or: "Lee (my dad), get up here! Haley is having a seizure!"

These are typical statements in our household. It may seem weird to you, but it is normal for us, and it is normal for a lot of people with severely disabled family members. I must admit, it's very hard to live like this. On weekends, when normal families might go out to dinner, or normal teenagers go out with their friends on Friday nights, or when the whole family attends a son or daughter's game . . . we are staying home because of Haley's disability.

Normally, when my friends ask if I can do something, I make up an excuse. The truth is: I can't because of my disabled sister. Do I blame Haley for this? Absolutely not. Do I get really mad sometimes? Yes. Does my family argue a lot over something involving Haley's disability? Yes.

But this is normal for people with severely disabled family members. Despite all these downsides of Haley's disability, sometimes she is the life of the household. On her good days (when she's not having seizures or sick), Haley will laugh, smile and hug and kiss everyone in sight. Anyone who walks into the house on one of these days will cheer up as soon as they see Haley. Sometimes when my parents or I are having a bad day, it's a joy to come home to a happy Haley.

And it's not just at home that Haley brings happiness. On her good days, Haley makes everyone in her class happy. Sometimes she will come home having beaten her whole class in a special bowling match. Or we might find out she has been voted "princess" of her Winter Ball.

When we do go out, we have to plan it around Haley's feeding schedule. She has to eat once at least every three hours. We have to walk her so she can have as much exercise as possible. We have to go to places that aren't noisy and that have room for her special stroller.

However, Haley loves to see people. Some people smile when they see her. Others stare. I'm fairly used to this now . . . I just stare back, and make it obvious they should stop staring. A few years ago, my parents practically had to hold me back from fighting anyone who stared at her.

Occasionally, I have to explain to a young kid who asks what's wrong with Haley. Normally I just say she's tired or in a bad mood. I know this isn't the best approach, but I have a hard time keeping my temper with people who do not treat Haley like a person. Others try to ignore Haley, thinking that if they don't look at her, they are being polite.

Despite all these problems, we continue to live our lives as normally and happily as we can.

Haley struggles to keep in her tears when she really wants to tell us something, but she can't.

However, we have learned to be stronger and happier when we face problems like this. If Haley had to live with any family in the world, I'm very glad it's us. It might seem like torture sometimes, but kids like Haley who struggle every day -- wincing with pain about something they cannot tell us -- are truly a blessing in disguise.

So next time you see a disabled person having trouble in a parking lot, don't stare. Instead ask if they need a hand. I guarantee they will appreciate it, even if they don't accept your help. They will go on with their day with one less person who stared at them and one more person who wanted to help.

Ben Allen is a sophomore at Grand Island High School.

There are no comments - be the first to comment