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A life of quality.

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I am hoping that Amelia's story will help demolish someone else's brick wall for fair and equal medical care. Because now, when someone googles "organ transplants and the disabled" like I did in 2012, Amelia's story of hope and success is the first on the page.

Editor's Note: The following talk was delivered by the author and mother of Amelia, Chrissy Rivera, at the American Academy for Developmental Medicine and Dentistry's (AADMD) Annual Education Conference held in Princeton, NJ last June 2014.

Every morning, on my way to work, I pass these beautiful townhouses surrounded by a four foot brick wall that borders a development. This complex is on a busy corner, and there is often one section that is crumbled or damaged because of an accident. I teach in an affluent neighborhood and this wall is often repaired the next day with the same bricks that I am sure have some historical value. I sit at the light every morning, waiting to make my turn onto Main Street, noticing the different repairs that have been made to the wall over the 14 years I have passed them. If you look closely, you can see slight differences in some of the bricks that they couldn't match exactly to the older bricks that were pulverized. But overall the wall is strong and durable and gives the complex a protected feeling of keeping people out or securing those inside.

From the very beginning of Amelia's life, society has been building and rebuilding a brick wall around her because of her intellectual and developmental disabilities. Glitches on several ultrasounds, even before her first breath, prompted the weekly question from medical professionals, like "Are you sure you want to keep this baby?" Every week we would say yes, but every week they would lay another brick around her fragile life. After she was born, the specialists would spread the mortar around with labels like, "WON'T EVER TALK," "WON'T EVER WALK," "WON'T LIVE PAST THE AGE OF TWO," "WILL NEVER KNOW YOU." Our family soon became professional brick slayers. When she celebrated her third birthday we pulverized the wall denying her the right to live past the age of two. The first time she squealed with delight because our dog licked her face, we knocked over the communication wall. Since then, words were never needed for her to share her feelings with us. And when she would fuss until one of brother's cuddled her, we picked up our sledgehammers and crushed the "She will never know you wall." By the age of four only some gravel and bits of red clay surrounded Amelia. I tackled her IEP, fell in love with her therapists and teachers and most importantly educated her medical specialists that Google cannot dictate the life my daughter will lead, no matter how many times you type in her syndrome.

But, you see, that is the problem with Brick Walls, as quickly as they are demolished, someone with cement, a few bricks, a steady hand and some power can erect it again like nothing ever happened. In January of 2012, in a conference room in Philadelphia at one of the most prestigious Children's Hospitals in the world, Amelia's brick wall was resurrected again with one simple phrase, "mentally retarded."

This time the wall was erected swiftly and diligently and within one hour there was only one small space left. Amelia was inside this fortress, being denied lifesaving medical treatment because, according to doctors in charge of transplanting organs, her "quality of life" was not the same as other children. She was not eligible for a transplant because of a micro deletion in her fourth chromosome which meant, according to medical professionals in the year 2012, their only solution was to let her die.

We went home and we cried and we cried and I wrote and I wrote and then I researched and I researched what this death sentence meant to my baby and the millions other parents who have their own babies with what many doctors like to call a lesser quality of life.

Many people question the quality of life Amelia lives. This term bothers me almost as much as much as the "R" word. Glance at her, you might see a small six year old who cannot talk or walk. Look closer, you may see a half smile, her raised eyebrows, or her wrinkled nose. Stay a little longer, and her smile will broaden, her arms and legs will move wildly, and a shriek of excitement may escape her ruby red lips. Whipping her pigtails from side to side, you can't help but chuckle at this welcome dance as she greets you into her happy and safe world. A world where you will never be judged by the amount of the chromosomes you possess. Suddenly fixated on her eyes, you may begin to wonder what she is seeing in you as she looks deep into the quality of your life and what you have accomplished with all of your "normal" abilities. After spending time with Amelia, it is easy to figure out that she knows who she is and what she wants without her ever speaking a word. Her quality of life can be measured by how much she has affected the lives of others. Her quality of life can be measured by how much she loves and how much she is loved by so many. She has touched more lives than I could ever imagine to reach within the time I am given here.

Fast Forward six months after her transplant denial and Amelia is approved by CHOP, and I am approved by Penn to donate. Everything that happened in between was because many people spoke up and shared our story. With the help of many people in this room, many parents who said this could be my child and many different organizations; Amelia's brick wall was leveled again, almost one year ago today, when she received my kidney in an operation that saved both of our lives. For me it was a revival of hope in humanity that was extinguished the day she was denied. For her, it meant a working and functioning kidney. Both are essential to survive in the 21st century.

I don't have a concrete solution to change the stigma that exists in the medical community for people with intellectual and developmental disabilities. I wish there was an easy answer I could give you. But I am hoping that Amelia's story will help demolish someone else's brick wall for fair and equal medical care. Because now, when someone googles "organ transplants and the disabled" like I did in 2012, Amelia's story of hope and success is the first on the page. Thank you.

Chrissy Rivera is mother to Amelia, who was diagnosed with WHS at two days old. Chrissy, who is a teacher, lives in New Jersey with her husband and two other children, Joey and Nathan. Visit: http://wolfhirschhorn.org/2010/03/amelia/amelia/
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Author:Rivera, Chrissy
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Aug 1, 2014
Words:1172
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