I don't remember exactly when I realized my sister was different from other kids. She was six years younger and waddled like a duck, but we just thought it was cute and she would grow out of it. When she was 4, the doctors in San Diego, where we lived, gave her cute little waddle a name: limb-girdle muscular dystrophy. At 10, I had no idea what an impact that diagnosis would have on my family.
My parents, Thom and Ginny, and my sister and I have always been a very tight-knit family. Finding out about Mandy's muscular dystrophy brought us closer.
Mandy got her first leg braces in kindergarten. By that time her waddle was no longer cute and she was noticeably different from the other children. Unfortunately kids can be mean and Mandy was teased a bit. This infuriated me, and several times I found myself stepping in to stand up for my sister. As we grew up, she came to rely on me as her protector.
One day, when Mandy was in elementary school and I was in high school, she got home from school and came into my bedroom looking devastated. When I asked her what was wrong, she cried and said that a group of boys teased her every day and called her "ducky" because of the way she walked. She made me promise not to tell our parents. She didn't want them to worry.
I was furious. The next day I drove to the school and confronted the boys. Needless to say, they never teased her again. We didn't tell my parents about this until well into adulthood.
You see, as Mandy's older sister, I felt it was my responsibility to protect her, and mine alone. I didn't want my parents to worry any more than they already did, so I took it all on.
People noticed early on how adorable Mandy is and what a great personality she possesses. I distinctly remember people coming up to us in the mall and saying, "Wow! What a beautiful child you have!" My parents would smile, obviously proud of her.
Inside I was crushed. No one seemed to notice that the strangers said, "What a beautiful child." What about me? That's when the jealousy started.
It's inevitable that a child with a disability will receive a lot of attention. There are doctors' appointments and concerned friends and relatives checking in. The parents are naturally worried. In Mandy's case, they were determined for her to lead a normal life. My mom and dad made sure she did everything she could on her own. They went to her classes and helped Mandy explain her disability to the other students.
When Mandy was 8, she became the San Diego County Ambassador for MDA. For Mandy, this was a life-altering experience. She stood in front of huge crowds and talked about her disease. People loved her and she was good at what she did.
It was amazing to see her confidence level go up. All of a sudden she was no longer just different; she was a star.
I developed new, mixed feelings. On the one hand, it was neat to see my sister in such a role. I knew what a strong and courageous girl she was and was proud of her.
But another side of me was secretly jealous. I wanted to be in the limelight, too. I wanted to stand in front of groups of people and have them clap for me. I wanted to have people dote on me like they doted on Mandy.
I can't begin to explain the guilt I felt with this. How dare I feel this way? I never told anyone. I just sat back and smiled.
It didn't take long for MDA to realize how extraordinary Mandy was, and within a few years she became the California State MDA Youth Ambassador. This eventually led to her being chosen as MDA's National Youth Chairperson, and consequently to her career in broadcasting. These experiences shaped Mandy into the woman she is today: an incredible, strong, gorgeous 24-year-old. Throughout all of this, I continued to be proud but secretly envious and a bit resentful.
Don't get me wrong; I got attention as well, especially from my family. I was in all sorts of sports and my family never missed a game. They were always there, cheering me on, but that wasn't enough for me.
I didn't have a lot of self-esteem. I was on the chubby side, no matter how active I was. My parents told me I was beautiful, too, but I didn't believe them. I wanted to hear it from other people.
Looking back, I know these feelings were unreasonable, but I couldn't help them. Eventually, this jealousy led to a serious eating disorder that resulted in seven years of struggle. When my parents were told, they took immediate action and supported me throughout a long but successful recovery. I did a lot of soul-searching as I recovered and realized some things about myself that weren't pretty.
Through all of Mandy's accomplishments I'd become prouder of my sister and at the same time more ashamed of myself. I hated what I looked like and I hated that I didn't get the attention Mandy did. I would have given anything to have looked like Mandy and to have received that attention, even if it meant having her muscular dystrophy, her juvenile arthritis and her constant pain.
It took me a long time to tell my parents this and when I finally did they were crushed. They felt they'd done something wrong, that they had let me down. That was far from the truth.
|Cory Van Benthuysen Hoffman, 29, lives in San Diego with her husband, Reuben, and teaches deaf and hard-of-hearing students. Mandy Van Benthuysen, 24, served six years as MDA National Youth Chairperson. She's now a production associate for the television show "Dr. Phil" in Los Angeles.|
I've come to realize it was impossible for Mandy not to get so much attention. I now know that I got equal amounts of attention, but I didn't see it at the time. I'm not saying I went through all the things I did because Mandy had muscular dystrophy, but her disease played a large part.
Now I'm an adult and I know how to deal with my feelings. Growing up, I didn't know how to handle all the fears I had for my sister or my jealousy. So I kept them inside and let them hurt me until I learned a better way.
My advice to parents is, "You aren't the only ones watching your child go through the effects of muscular dystrophy. Your other children are experiencing it, too, only they may not know how to handle what they're feeling. Watch them, pay attention to them, and look for any signs that they might need some help dealing with their emotions."
Looking back, I truly wouldn't change anything that's happened to me or the wonderful experiences Mandy has enjoyed. In truth, having a sister with a muscle disease has made me a better person and I'm grateful for that.
My sister is my best friend. We never fought like other siblings do. We love each other and are there for each other every day. We have a relationship others only dream of. We also have very loving and supporting parents.
Mandy's disease was devastating at first, but we came together as a family, vowing never to feel sorry for her and always to look at the positive side of every challenge. This attitude eventually spread to all aspects of our lives. We confronted my eating disorder head on, stayed positive and conquered it.
Mandy's disease taught my family that everything happens for a reason. I am who I am in large part because of my sister.
Last year my husband, Reuben, and I were overjoyed when I became pregnant, but we lost the baby three months later. My family came together immediately.
My dad said, "Well, let's look at the positives. If your mom hadn't had a miscarriage before you were born, you wouldn't be here. There's a reason for this. Something good will occur and you'll get through it."
I'm happy to report that Kaya Joy Hoffman was born on Nov. 2. I only hope I can raise my child with the same values and positive attitude my parents and sister taught me.