Sunday, April 01, 2012

Perfectly Imperfect

Why is it that in a world where we're all imperfect...we expect people coming into the world to be perfect? There's a recent case that kinda got me heated...Like this one or My favorite . Don't get me wrong. When doctors screw up they really should get sued. I also acknowledge that taking care of a child with disabilities is really hard (mentally, physically, emotionally...etc depending on what kind of a disability the person has) and I do not judge those that chose to terminate a pregnancy based on their various reasons. I also can not judge those that chose to sue because they were never given any choices by their doctors.

All I can say to those contemplating aborting a child because they have an imperfection is that-- what if you have a "perfect" child and that child catches a disease that renders them disabled...what will your choice be then? Just a thought.

I have a friend who before her 30th birthday had her first baby-- born unexpectedly with Trisomy 18. The doctors had stated multiple times that everything was okay with the baby. Baby A.R was born at 3lbs after a C-sections...and the parents in the confusing haze that comes when one has just given birth were informed that their baby was very ill and would probably die shortly. Hospice was the only option. They took it all in stride. The baby was supposed to stop breathing any minute now. They took baby A.R home, where she slept on her mother's chest each night. A mother who hardly ever slept for fear of finding her baby gone from this world unnoticed.

Through her parents hard work, AR was kept alive. They knew she needed heart surgery--but doctors were resistant. She needed to gain weight before they could do anything, and, she was probably not going to make it off the ventilator when surgery was done. Her parents worked diligently to get her to the right weight, sometimes feeding her every 5 minutes. She finally made it for her heart surgery and was found to have liver cancer. That too had the doctor's troubled with surgery, but still little AR's strong will pulled her through.

She is almost two years old-- a breath of fresh air who loves Elmo, laughs when she's thrown in the air, loves to chew on chicken bones, practices keeping her head up on her own and can stand independently for 2 seconds. She enjoys basking in the sun too...boy does she ever! Her face is so peaceful when she is in everything is just splendid in the world.  I especially love how she looks at her mother.

When I think of the road blocks AR's parents have faced with dealing with medical professionals, I wonder at how people that are less read (they both have Ph.D's in chemistry) and do not have the resources to fight-- or the ability to argue their case to physicians and the ethics boards handle such a diagnosis.

Trisomy 18 wasn't a diagnosis I was well versed in till AR's birth. Many people I would assume learnt of it from the recent medical emergency that Rick Santorum's daughter suffered. AR is almost always in the hospital for one thing or another, but that doesn't seem to phase her parents. They are truly amazing.

My parting words are these: Nobody is created perfect. We are all perfectly imperfect.

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