Saturday, May 9, 2009

The Truly Beautiful Ones

My final posting about Jonathan Mooney’s book involves the chapter “How to Curse in Sign Language.” It tells the story of a divorced mother, Deborah, and her decision to adopt a little girl, Ashley. Mooney said the following about Ashley’s needs: “Ashley had been born to an alcoholic, anorexic mother fourteen weeks prematurely. She weighed just over one and a half pounds, and her medical birth records state that she smelled of alcohol when she was delivered. A liver biopsy was performed right after her birth, and it showed that a tumor was present. She also had a ‘brain bleed.’ Even more threatening to Ashley’s health was a rare condition she had called Juvenile Xanthogranulomas, which causes tumors to form all over the body. These tumors, according to Deborah, ‘formed on Ashley’s skin, under her skin, on her eyes and ears, on other vital organs, and on her brain’” (p. 109). In addition to the above, Ashley has a seizure disorder and is blind and deaf, among having other medical difficulties.

However, as often is the case, this is not a sad story about a child with a disability – it is a story about love, acceptance, and ability. When Deborah first set eyes on Ashley she said “I thought she was beautiful. Her left eye, because of glaucoma, was about twice the size of her right eye. And although that skewed the symmetry of her face, she had a smile that lit up the room!” (p. 110). To tell the truth, prior to reading this, I used to think that I was someone who made a difficult, yet noble choice in having Quinn (given the prenatal diagnosis), but now I know that I am not such a person. The person who is noble is Deborah and people like her. She could have chosen any child or just to not adopt at all. She already had a son from her marriage. But she fell in calling in her heart to adopt and she fell in love with Ashley and Ashley alone. Ashley was the one. She saw Ashley for Ashley and did not fall into the trap that many of us do, seeing the disability first and then Ashley. I am ashamed to say that if this experience wasn’t placed upon me through the pregnancy, I would not be where I am today. I would never have read this book. I would never have looked at individuals with Down syndrome like I do today. I just adapted to what was given to me. It is people like Deborah who with love and faith make a true choice to bring a child with special needs. They are the heros and the noble ones. They are the ones with true love and faith in their hearts. In Mooney’s chapter, Deborah had many other salient things to say – like how the rejection is ten times worse than any of Ashley’s medical issues, that with love you can see beauty and ability, that we need to get beyond a view of fixing those who are not like others, and how having a sibling with a disability can enrich a child’s life.

If you are interested in this topic, check this inspiring story out. This is a family who experienced the same calling as Deborah.

In addition, please visit Reese’s Rainbow here, where there are many beautiful children with Down syndrome who need homes. They are now in countries around the world. These particular countries do not value individuals with Down syndrome and these children will be placed in a mental institution if not adopted. Almost every day I go and see Lera’s beautiful face here. I see she is on hold now – and I hope that is because she found a forever family. She deserves this just like Ashley does. You can also follow one family’s journey in adopting here. God bless all these beautiful people - Deborah, Ashley, and all these familiies and little ones who are or have experienced adoption.


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