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Wednesday, February 1, 2012

Thank you, Mr. Santorum

Some of you may be aware that Republican presidential candidate Rick Santorum has a three year old daughter, Bella, with special needs. She has Trisomy 18, which is a genetic condition caused by the presence of all or part of an extra 18th chromosome. He has described her health as "always quite frail and unexpected" and talked about how "one cold" can make her gravely ill.

Sounds familiar.

Recently in a web video released by his campaign, Mr. Santorum said, "I look at the simplicity and love she emits and it's clear to me we're the disabled ones."

This resonated with me. Big time.

There are a lot of things Ella can't do that she *should*. She can't talk. She can't walk. She can't even eat by mouth. She requires a tracheotomy to maintain her respiratory status, a feeding tube for her nutrition, and, most recently, had a vesicostomy placed to keep her bladder drained in an effort to reduce urinary tract infections. At nearly four years old, there isn't really anything she can do for herself.

But within her disability lies amazing abilities that typical people - the "we're" that Mr. Santorum refers to in his quote - can not achieve.

She can truly love unconditionally.

She can charm even the hardest heart with a single smile.

She is often the ONLY thing in this world that can bring a smile to my face in the darkest of times.

She has the ability to make people fall in love with her at first sight. I have seen it over and over again. They may not remember me, but no one ever seems to forget Ella. I have witnessed the amazing effect she has on seemingly everyone so many times. She continues to amaze me every day.

Getting back to what she can't do, there are things that seem to be second nature to typically-abled people that I am grateful she doesn't have the ability to do.

She could never hurt your feelings, or make you feel bad.

She could never physically harm another person, nor does she have the ability to want to.

She has been through more physically in her almost four years than most people will endure in a lifetime: surgeries, examinations, therapies, procedures, illnesses, and endless poking and prodding. Though she may feel pain in a moment, she does not have the ability to carry that with her. She doesn't have the ability to remember or to become bitter. Or to feel sorry for herself.

How amazing is that?

So yes, Mr. Santorum. I completely agree. It is certainly clear to me who the disabled ones are, and we can learn an awful lot from people with disabilities.