Stories from the OI Community: Su's Story

Posted on September 30, 2006 at 07:21 PM

Su is the mother of two children, Kara and Nick, of which Kara has OI. This story truly goes to show that you can do anything you put your mind to. Here are Su's words:

"Disability is not a brave struggle or courage in the face of adversity... disability is an ART, an ingenious way of life." Neil Marcus

I am a parent of a daughter with Osteogenesis Imperfecta, ( O.I.) a name new to me in the coldest winter of January 1980. Kara was the chosen name for nearly seven and one half pounds of more than flesh and bone. Kara was talking and singing to me in our farmhouse kitchen a little over one year of age. I felt so blessed to be in charge of this child. We had many animals on the small farm along with plenty of work. Her love for animals was only countered when her brother, Nick, arrived to be the best friend in her life. Kara was two when Nick was born into our lives. Like twins, Kara and Nick have a precious relationship developed by a unique deep understanding of each other's identity. Each winter since that cold January has been warmer and more meaningful. In one mind set, both of my children were born into O.I.

My daughter Kara was born with several fractures and she created quite a stir in our small capital city as not one doctor knew very much about this rare bone condition. Knowledge is power, so I went outside of the community to Colorado to learn first hand from those who were doing research on O.I. Monies for research were cut off by a conservative administration in Washington before I could get most of the test results, and that began my quest for the "battle of the barriers" for Kara.

I battled for health care as my employment brought my resignation to the hospital when Kara was in traction. This would leave me without insurance. (My employer said I had missed too much work taking care of Kara. ) I battled for her education where she would be mainstreamed in regular classroom. Kara and I spoke to church groups, city clubs and through our United Way of Kentucky to educate our community about O.I.

Soon the battles became a positive force toward understanding. I took Kara to Shriner's Hospital for the best health care possible along with adding group insurance from the public school where I work. Our city cut curbs and added ramps to make the city accessible to everyone. Our school called on me to work with families to present the best education for our special needs children.

Kara had a very interesting education. I recall once when her friends and the families of our community supported our quest to add an elevator to the high school. You see, Kara walked to receive her first communion and even in her 6th grade graduation. But, Kara has taught me that walking can be overrated. It is necessary at times to understand that how you get around is not as important as what you do when you get around.

Kara uses a wheel chair more than her walker which she uses inside her apartment. This is acceptance. Acceptance is constantly fine tuned with each one of our lives and O.I. In the fall of Kara's senior year of high school Nick was a freshman playing first string varsity football and Kara was in the homecoming court. I had invited the grandparents to the game and just before the announcement of Homecoming Queen, I asked my father. "Do you think Kara is the queen?" I will never forget his answer. He smiled and said, "Who else would they consider ?" Kara rolled, not walked to receive her crown and flowers. Who else? Yes, Kara has O.I. but both Kara and Nick are athletic. Kara was racing in her chair in middle school.

I walked beside her and when I could no longer keep up, Nick ran beside her in the races. Kara began to train in swimming and competed in college in adaptive sports. Kara was chosen by Team USA to train and compete in the 2004 Paralympics in Athens's Greece. The entire family cheered as Kara swam representing the United States in Greece.

As you can see, Kara is a positive force that challenges barriers in our society. Kara chose to attend Wright State University in Dayton, Ohio. Nearly two and one half hours away from home, she graduated and now is working toward her doctorate in clinical psychology in Nova Southeastern in Florida.

Kara is nearly two days away from home by car now but Nick, Kara and I manage to fly back and forth to visit and I look forward to every minute we can spend together.

Keeping it real, we have had some very humorous experiences with O.I. The kind grocery clerks want to help me as I had to push the chair many, many trips to the local grocery. Some would pick up the chair before I could give instructions. They would pick up wheels first and both chair and clerk would take a nasty spin. Trips to watch her brother perform as an athlete would challenge us to using large orange pumpkin trash bags to cover Kara and the chair to protect her from the rain. We had to just laugh it off; we figured some persons would stare anyway.

Once after a day of open eye stares, Kara told some children at the Cincinnati Zoo that were staring at her, "This is what happens to you if you don't drink your milk." (We had already explained about her condition about seven times) Kara got stuck in a metal beaded wall of a children's museum in Atlanta when she just "wanted to go through like everyone else." It took us about 20 minutes to untangle the metal from her chair.

Nick, Kara and I spent the long night in an emergency room on New Year's Eve one year. Kara had two fractures from a fall from her chair. All night we were entertained by the long lines of drunks and prisoners who were in the emergency room with us.

Fractures of the bones have never fractured the courage it takes to live in our society as a person with a disability. O.I. is a part of Kara and a part of us and we accept it. The acceptance of O.I. is fuel for demanding high standards of dignity, life, liberty and opportunity in our society.

No Pity HERE. Disability is an truly an ART and an ingenious way of life.

What an inspiring story. Thank you Su for your submission.

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Reading Kara's story really meant a lot to me, Su! I am learning so much today about what daily life is like for children with OI and their parents.

I can't imagine how frustrated you and Kara were when a grocery clerk would accidentally spill Kara onto the sidewalk or a person would stare at her.

I am proud to know Kara, who has made so much of her life and does not let much of anything limit her!

Posted by: Stuart | September 30, 2006 07:29 PM

Nice story Su! You are a wonderful writer! And your words are so true, I am a work of art, in a Picasso sort a way...

Posted by: Adam Ayers | September 30, 2006 08:11 PM

Thank you for the concern.I need to explain that Kara was never spilled out by the grocery employees. (My words could have been a bit more clear in the story) I would be busy placing Kara in her car seat and they would try to load the wheelchair in the van. Yikes. I have seen some falls from persons trying to help with the chair too. The stares were and are still a reality. The stares are at times very annoying and I am sure Kara feels like she is in a fishbowl at times. But, some other areas of being OI are much more difficult. Su

Posted by: Su Sheridan | September 30, 2006 08:21 PM

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