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It's Only an Extra Chromosome

Nov 03, 2014 11:40PM ● Published by Ron Wilkie

I fully intended to write something witty about exercising your right to vote this week, but as they say; “All politics is local.” Which loosely translated means that we vote based upon local problems or issues. So this week I voted against writing about voting due to a very local and personal event.

My mom’s youngest sister, Kathy, lost her struggle with dementia Saturday evening, so I’m dedicating my space to her this week. Besides anyone locally who is apathetic enough to need prodding to vote in this off year election is not someone that I want to prod and I certainly do not want anyone who does not see a stark enough difference between the candidates to exercise their civic right to vote. But that is a subject for another day.

My aunt Kathy was a special aunt. Not because we were only 9 years apart in age. Which is kind of special in its own right. One of my best friends in grade school and Junior High has an uncle that is only 1 year older, so I didn't see anything too special about the fact that we were close to the same age. My mom was the second oldest of 8 children and Kathy was the youngest.

What made Kathy special was the addition of an extra chromosome. She had a condition known as Down syndrome. There are many euphemisms for this condition that I’m sure she heard many times. Thankfully she was not able to fully comprehend most of the negative ones.

I grew up knowing never to use any of them. My mother bristled at any term other than Down syndrome and was quick to ask any guests to not use these terms around her. Angering my mother is difficult, but this topic would get her there quicker than any other. I tend to be self-deprecating, so I’ve used some of these terms to describe my less proud actions or moments. Mom bristles at these moments too, so I try to catch myself and refrain from this practice.

Kathy was high functioning, she worked at a local job center similar to Beaver Dam’s Green Valley Enterprises and lived in an apartment with another woman until her health declined and she was moved into an assisted living medical clinic near the end of her life. This, however, is not how I chose to remember my aunt Kathy.

It was at work and at family reunions that my memories will be focused. Persons with Down syndrome or any other condition that makes them stand out from the crowd want two things that we all crave. Love and acceptance.

Kathy was no different, she would go out of her way when we visited her or as she arrived at family reunions to greet everyone and ask what they had been up to or how they were. Then she would proceed to catch you up on what she had been up to and how she is. Kathy had a genuine interest in her family and wanted to be a part of any festivity.

However, what I remember most about Kathy and the people like her that she worked with was this. They accepted and loved unconditionally. I had the privilege of auditing local vendors for my first employer. Kathy worked for one of those vendors. Once per month for 2 years I would visit her job shop to audit their quality procedures.

Upon my first visit I let the manager know that Kathy was my aunt and I was unsure of how she would react seeing me. He smiled and led me directly to her. Upon seeing me Aunt Kathy gave me a big bear hug and kiss and proceeded to ‘show off’ her nephew to every associate in the facility. Every single employee gave me a hug, every month for 2 years. Suddenly I'm the one feeling special.

Funny considering that this is a group that society calls special, sometimes lovingly, sometimes mockingly. It is this image that will last a lifetime for me. 

We may not understand Down syndrome and if you are not used to it, be uncomfortable around people with the condition, but believe me; they do not want you to fear them, they want you to accept and love them, just the way they love and accept you.

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