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Happy birthday! In honor of my sister
July 27, 2011 - Keith Frederick
Though it makes me feel old, today is my sister's 27th birthday. In her honor, I'm posting a column I wrote in 2005.
It was a first-person piece for a story we did about children living with a disabled sibling. If I were to write this today, I'd say how blessed I am to have kids who love their aunt so very, very much and how proud Stacy is when they sit with her.
When the topic "Living with a disabled sibling" came up at a story meeting last month, it struck home.
I barely remember a time when I wasn't living with a disabled sibling.
In April 1989, my sister, Stacy Frederick, then just 4 years old, was admitted to Altoona Hospital. Doctors thought she was dehydrated. While there, she developed a severe headache which wasn't being eased by painkillers. After 10 days, she was flown by medical helicopter to Geisinger Medical Center in Danville.
After a brain biopsy at Geisinger, Stacy fell into a coma, and it was discovered that she had tuberculosis meningitis.
By that point, the disease was far into her brain and she was hovering near death. My mom stayed full time in a Ronald McDonald House on the hospital premises, while my Dad and I visited on the weekends. The Ronald McDonald House is almost the entirety of my memories of Geisinger. Most of the next few months and years has been blocked out of my mind, and my dad's, as well.
I remember a few things: breaking down to my third-grade teacher and crying my eyes out when we didn't know what was wrong; seeing Stacy for the first time when she was in Geisinger, with most of her head shaved and tubes and wires coming out of her everywhere, looking very little like my adorable little sister with the curly hair.
I vividly remember a dream where Stacy died and we shot her out of a spaceship like the crew of the Enterprise did to Spock in "Star Trek II" (I can laugh about that dream now, but it was horrifying to an 8-year-old); and I remember my aunts and uncles buying me a Nintendo for my birthday, because all of our money was wrapped up in hospital bills.
Stacy came out of Geisinger after three and a half months not being able to walk, speak or even control most of her body. I suppose that medically she would be classified a quadriplegic.
Stacy was the only kid to get sick after being exposed to TB at a school and eventually kids all over Altoona tested positive for the disease (though no one else got sick).
Living with a disabled sibling will never be easy. It will always be a struggle to understand and deal with the situation. I can give a few hints to parents, though, to help them help their child:
* Explain to the sibling of a handicapped child exactly what is wrong with their brother or sister. For a long time, I wasn't sure if my sister was "retarded" or not, and I got furious any time the word was used. The word has taken on a negative connotation. It took years for me to understand that "retarded" and "handicapped" do not mean the same thing.
* It is vital to explain and show the sibling of a handicapped child how to deal with the child's disabilities. One of the most shameful experiences of my life was when I was trying desperately to keep my sister from falling over while she was supposed to be sitting up on the couch — it was only a year or two after she got sick and she had very little control over her torso. I got frustrated and spanked her. My mother caught me and Stacy started crying. I don't know that I've ever felt guiltier.
* Any responsibility given to the sibling of a handicapped child is a bonus. It can do wonders for the child's confidence and closeness to their brother or sister.
Today, Stacy has limited use of her left arm and is able to stand with the support of rehabilitation equipment She is very smart, smiles all the time and enjoys picking on people —my father especially.
One of my favorite stories from her teachers at Altoona Area High School was when they were doing math and she put her head down on her wheelchair tray as if she were too tired to work. The teachers put away the math material and she put her head right up and started smiling. She graduated from Altoona this year.
But no matter how good she gets, she'll never live a full life. She will never walk. She will most likely never be able to talk. The one thing that sticks in my mind, the question that keeps me up at night is this -- will she die young?
But that's a thought that has to be pushed aside to stay sane. I love my sister more than anything in the world, and each time she tells me she loves me with her crude sign language, I feel like everything will be all right.
It's easy to tell people my age -- 25 -- what happened to my sister, I simply say, "Remember when you were a kid and you had to get tested for TB? That's because of Stacy." For people who weren't living in the area at that time, the story gets a lot harder. Each telling is an emotional journey for me that leaves my chest tight and my heart aching.
Growing up with a disabled sibling has changed me forever. I will never be the same person I was going to be before she got sick. Because I look at her smiling and I feel lighter than air, because I hug her and feel my heart flutter, because the love I have for my family is so great... I am a better person than I could ever have hoped to be otherwise.
My daughter, Melody, watches TV with her aunt Stacy.