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My Perfect Child

What God taught me through my daughter's disability.

Our daughter was born at 5:22 P.M. on a Friday afternoon. For two hours, we reveled in the sweetness of new life—her pouty lips and soft skin, her deep blue eyes, her full head of black hair. Then a nurse called my husband out of the room. When Peter returned, it took me a moment to see that his eyes were brimming. "The doctors think Penny has Down syndrome," he told me. And the world began to break into pieces.

A few hours later, a woman was giving birth in the adjoining room. "She's perfect! She's perfect!" they exclaimed, as another baby girl was born.

In those early hours, I came face to face with my unspoken assumptions about my child. I had thought Penny would be just like me—a little girl who walked early and taught herself to read, who won academic awards in high school and got in early at Princeton. Peter, who was a high-school teacher and a varsity athlete, had shared many of those assumptions, expecting to see his competitive spirit in his new daughter.

Despite our Christian faith, we had sub-Christian expectations about our children's appearance, education, and abilities. I would never have stated it so bluntly, but in truth I wanted and even thought I deserved a "perfect" child. God gave me a child with an extra fold of skin around her eyes and floppy limbs and intellectual limitations. I didn't know what to do.

Doctors consider Down syndrome a birth defect. Other words to describe it include abnormality and disability. According to the doctors, Penny would have trouble learning. She would probably need glasses and possibly hearing aids. She would never be even five feet tall. She would have trouble communicating. I quickly learned that many doctors and parents alike believe children like Penny should never be born. The American College of Obstetricians and Gynecologists recommends that every pregnant woman receive prenatal screening for Down syndrome. Of the women who screen for Down syndrome and receive a prenatal diagnosis via chorionic villus sampling or amniocentesis, 90 percent choose to terminate their pregnancies. From the moment she was conceived, our daughter fell short of our medical and cultural standards of worth.

After Penny was born, I thought I needed to abandon the hope of perfection altogether. Sin will always render me and my children imperfect. But I still wasn't sure how to think of her, how to have hopes and dreams for her once those initial expectations were stripped away.

When Penny was five months old, I was playing with her in our living room. By that point, I no longer saw her in terms of what she couldn't do. My heart skipped a beat when she turned her head at the sound of my voice. I had felt wonder as her eyelashes grew long and dark, when she smiled and cooed, when she nestled against my chest for comfort. That day, as I massaged her pudgy legs and wiped strands of dark hair from her eyes, I remembered a verse from Matthew 5: "Be perfect, as your heavenly Father is perfect."

Jesus was vulnerable, needy, dependent, and limited, but I wasn't able to see him that way until Penny illuminated it for me.

I looked it up in my Greek New Testament. The Greek word that was translated perfect is teleioi, which comes from the word telos, meaning "complete," "whole," "full-grown," or "mature." In other words, this perfection has to do with becoming a certain type of person. It has to do with becoming the complete, whole, mature, full version of ourselves.

A few verses earlier, Jesus offers his description of blessed humanity. A quick glance at the Beatitudes makes clear that being fully human—being "perfectly" human—is not about physique, intelligence, or abilities. It is about meekness, sorrow, and longing for God. Being fully human implies understanding ourselves as creatures. As ones who are not God but rather formed by God, cared for by God, in need of God. Or, to put it differently, a major aspect of recognizing my humanity meant recognizing that I am vulnerable, needy, dependent, and limited.


From Issue:
December 2011, Vol. 55, No. 12, Pg 38, "My Perfect Child"
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Comments

Displaying 1–3 of 10 comments

FormerjewA

December 06, 2011  7:21pm

Excellent article. I feel that disabilities are predetermined by God. I had to learn how to cope with big disabilities at age 15. One was math issues, another was environmental allergies. We are all unique. I am truly grateful for such experiences because I can have an impact on anyone who I meet who also struggles with similar issues. I tell them, it was not myself alone who learned thru it, it was the lord who showed me.

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Terry Spencer

December 05, 2011  10:07pm

Thank you Julia for this article. I was blessed in my first pastorate to have in my charge a 20 year old Downs Syndrome man, Kenny. He taught me by example what humility really is (lack of self-consciousness). He was a bold witness for Christ. He took me to the home of a friend named, Billy. The grandmother answered the door and recognized Kenny. He introduced me and immediately followed with the words, "We came to talk to Billy about Jesus." No lead in word, or social tact normally associated with witnessing. Just a bold simple objective, talk about Jesus.

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Richard Davies

December 05, 2011  11:31am

Thank you for this terrific article. Our son was born with Spina-Bifida and we faced pressure from the medical community to abort him once we found out. Whenever I look at him and how amazing he is, I am thankful to God that he is here with us. I don't know what the future holds but I am happy that he is here even if he isn't "perfect", but then again neither am I! I find it terrible that in a society that claims openness and tolerance for all that there is a real undercurrent that is trying to eliminate the sick and disabled from ever having a chance at life, that is real hypocrisy.

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