The Gift of the Extra Chromosome
Posted Friday, April 03, 2009
It is now possible to determine with a high level of accuracy whether or not a child being carried in the first trimester has Down syndrome. All it takes is a sonogram and two blood tests. But one phlebotomist I know could not in good conscience draw the blood of a patient with this purpose in mind, because of Louisa. Louisa had Down syndrome and though we in the family treasured her 28 years, it was only after her death that we realized the full impact her life had on others.
Tom, a neighbor, wrote that in spite of the half century that separated their ages and the fact that he could not carry a tune to save his life (she was always singing), “Me and Louisa were special friends.”
I couldn’t understand it for a while. I was not in her age group. I do not understand anything about music. But we were special friends. Finally I figured out that everyone was Louisa’s special friend. She had that gift of being friends with whomever she was with at the time. It is certainly a gift that we very much have to ask God that we are given. She had it to perfection.
Louisa’s perfect gift had everything to do with something extra she had that most of us do not. While many consider Down syndrome a deficiency, the condition is rooted in an extra 21st chromosome. Tom had it right. It is a gift, and the rest of us are deficient. It is not just that we are missing that extra bit of genetic material. We so often miss out on the richest part of life: relationships.
Born with a serious heart defect that led to her early death, Louisa proved that it is not how long we live life, but how we live it each day that counts. She lived it to the full and relished those things in particular that the doctors frowned upon – like lots of goodies, chocolate, and all things sweet. “I love food, period.” She was short and seemed at times to be equally dimensioned in height and width. But any remark remotely referring to this optical illusion would immediately be strenuously rejected, “I’m round, not square.”
Louisa shared fully in the joy of those who rejoiced, particularly when it came to weddings or the birth of a baby. Though she could partake in neither of these events herself, she was an incurable romantic (often playing the part of the bride) and was always the first to painstakingly letter out a greeting to a new arrival. And she lifted up those in sadness through a press of her pudgy hand or a short phrase of encouragement. She used to swing endlessly on her favorite swing, singing Christmas or Easter songs. A friend told us later that hearing Louisa singing and swinging carried her through a period of deep turmoil and personal crisis.
Louisa was a peacemaker – in the family and in the world at large. When she was given an opportunity to write an essay on the Middle East in 1991 and earn a trip to Israel/Palestine, Louisa labored long and hard, producing a five-chapter document that moved freely between Old Testament stories, her favorite hymns, lines from Fiddler on the Roof or Handel’s Messiah, and current happenings in the region.
Here is Chapter Three, with only the spelling (and a little grammar) altered from the original.
They throw stones, the Palestinians, because the Jewish people take away their homes. But they are also very sad, the Jewish people. They are fighting for their homeland. But the problem is they both want the same place. They should forgive each other. Loving hearts. He got Israel in his hands and he watching over Israel slumbers not nor sleeps.
Now that Down syndrome testing is easy and safe, the American College of Obstetricians and Gynecologists recommends the test for all pregnant women. A recent New York Times article states that in the positive test population, 90% of the women choose to have an abortion.
I am still trying to grasp the meaning of that statistic. I find it even more difficult to imagine what life without Louisa would have been like. How impoverished this country would be without the thousands like her that are born each year!
There is no doubt that caring for a Down syndrome child carries immense challenges for family, friends, and school. But the rewards are immeasurable, and the lessons taught by individuals with Down syndrome (and Louisa sure was an individual) are simply not provided by those of us of “sound” mind. It is a matter of the heart.
Louisa died in 1996. In the final chapter of her essay, she offered us all a glimpse into a world she worked for every day but did not live to see, embracing all humanity:
All nations shall come together in peace and unity and sing we shall overcome and shake hands and hug one another. The heavenly kingdom will come on earth. Jesus loves Palestinians and Israelis. They will come both to the kingdom of God. Halleluiah. King of Kings and Lord of Lords. And he shall live and reign for ever and ever. Amen.
Pressure to abort a Downs syndrome child can come from all sides, particularly from concerned and well-meaning friends and relatives. If you or someone you know is dealing with a positive prenatal test and wishes to speak with a parent or relative of an individual with Downs syndrome, contact Dr. Milton and Sandy Zimmerman at 2255 Platte Clove Rd., Elka Park, NY 12427-9704, or the author at 340 Bellvale Lakes Rd., Warwick, NY 10990, or fill out the comment form below.
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