A Different Normal

By Kari Dostalik

Kari Dostalik, of Urbandale, IA, is secretary of the National Marfan Foundation’s Heart of Iowa Chapter. She became involved when her daughter, Haley, was diagnosed with Marfan syndrome more than 10 years ago. Kari hopes that sharing her story will not only raise awareness of Marfan syndrome, but provide a bit of hope as well.

Body Image – A subjective picture of ones’ own physical appearance established both by self-observation and by noting the reactions of others (Merriam-webster.com)

Images of flawless celebrities and supermodels can be seen everywhere you look, from magazine covers and advertisements to the internet. It’s only natural to compare oneself to these images. However, for those dealing with a medical condition, this is often a daily struggle.

When my daughter was first diagnosed with Marfan syndrome, a genetic connective tissue disorder, I not only worried about her long-term health, but how she would feel about herself as she grew older. Would she embrace her tall, lanky frame? How about her curved spine or long, spider-like fingers? Would others tease her because she looked different?

Early on, my husband and I worked together to show our daughter the beauty and functionality of her unique features while instilling a sense of pride and confidence in these differences. We focused on little things, like the wonderful hugs she could give with her long arms, and how she could reach a full octave on the piano at a young age thanks to her long, flexible fingers.

We also encouraged her to discover ways she was unique and beautiful. I clearly recall the first time she discovered that she could pick up things dropped on the floor of the car with her long legs and toes (a trick that proved helpful during long road trips). The large, confident smile on her face when she first lifted a Lego block up between her toes stays with me today.

Our daughter grew up understanding that the world would be a boring place if everyone looked the same. We encouraged her to embrace the differences in people and to treat others as she would like to be treated herself. We also knew it was important to lead by example and to practice what we preached. So, whenever one of us started feeling down about something like those extra five pounds, all we had to do was look at our daughter to realize how blessed we were and that we had nothing to fret about.

This was especially true when I went through chemotherapy when my daughter was eight years old. She encouraged me along the way and told me to have fun being bald since it was something I had to go through in order to get better. It was then I realized our words of encouragement over the years had sunk in and that she would be okay.

Over the years, our daughter has grown into a beautiful, confident “tween” who is very comfortable in her own skin. She has surrounded herself with good, caring friends and dresses in a way that compliments her body type while camouflaging what she currently considers a flaw – a protruding rib cage due to scoliosis. She made it through her first year of middle school with flying colors and continues to embrace the characteristics that make her unique. And, if anyone ever asks her about these differences, she doesn’t hesitate to tell them about Marfan syndrome.

My daughter recently told me she’s glad that she has Marfan syndrome because it gave her long fingers and legs, something no one else in our family has, making her unique! She’s proud of her differences and it shows.

Does this mean she won’t have any issues as she gets older? No. As a parent, all I can hope is that she continues to feel confident in her own skin and that we’ve laid the foundation for her to become a strong, confident young woman.

How have you helped your children deal with their “differences?” What has worked for you? Share your stories in the comments below.