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219 Wondering On the evening of March 20, 2011, the stage in the Timberline Church auditorium was graced with human beings who carry with them a parade of diagnoses. There—the girl whose arm hung stiffly, in a permanent right angle at her side. There—the boy whose head stuck out far beyond his neck. There—the girl whose short stature had no balance with her limbs. There—the girl who merely stood and stared when the music played. Gathered on that stage was an amalgam of birth defects, genetic mutations, the outcomes of accidents and injuries, and mysterious , still unnamed conditions that simply “are.” I could have made educated guesses as to the scientific labels and conditions assigned to most of the cast members of the show. The only diagnosis, though, that I would have been one-hundred percent accurate on would be for those individuals who have Down syndrome. I know that something unexpected happened to Michael’s chromosomes before, during, or after his conception. It was silent, it was unstoppable, and it was unknowable. I was not there—as Michael is adopted —so I have often tried to construct and crystallize and hypothesize my son into existence. Whatever the circumstances, I assume there was an abundance of love. I have no proof this is true, but my heart needs this to be a part of the story. I do know that one of a few explainable events occurred. In layperson terms, one possible scenario is that a translocation may have occurred 220 ♦ Life with a Superhero during cell division, where part of Michael’s 21st chromosome broke off and attached to another chromosome. As such, even though he would have 46 chromosomes, each one would carry an extra part of the 21st chromosome. Imagine it as a mutiny where a few mavericks of fortitude and fearlessness jump ship in search of a commingling with some new vessel, or where maybe a lonely traveler hitches a ride with a friend willing to provide transport. Translocation can be inherited from a parent who may carry what is called a balanced translocation that does not affect the carrier’s health in any way. In other words, the mother or the father had always harbored within their own genetic codes the possibility of having a child with Down syndrome. Or, something called a nondisjunction, might have occurred, when, prior to conception, the pair of 21st chromosomes fail to separate in the sperm or the egg. The embryo then has three copies of the 21st chromosome in every cell in the body, instead of the normal two. Here, I imagine the personified sperm or egg selfishly saving an extra copy of a piece of life and in the uniting expressing a replicating exultation of three. A specific type of nondisjunction is a called mosaicism, where the nondisjunction occurs in some but not all of the cell divisions. Having the mosaic form of Down syndrome does not necessarily mean that the condition will be expressed in fewer or less obvious ways. After birth, there are tests that can be done to determine the type of Down syndrome an individual has if such knowledge will help the family. Whatever the cause of Michael’s Down syndrome, in the instant that it occurred, this new genetic configuration immediately determined that Michael would have some degree of an intellectual disability. This new genetic configuration also began to determine Michael’s physical appearance. If Michael’s birth family could have witnessed Michael’s development in utero, they would probably have been able to spot nuances and unfolding differences. They would have seen the beginning of traits that now make possible a visual identification of Michael as a person who has Down syndrome. I wonder what it would have been like to have peeked inside Michael’s amniotic sac and pointed at each Wondering ♦ 221 new characteristic with wonder and an exclamation of there! There—the onset of a single crease down each stubby hand; There—eyes up at attention in a smiling slant; There—Lilliputian ears folded down on top, listening closely to a reverberating secret; There—from the vestige of a tiny mandible, a lolling tongue licking an impossibly short thumb nested in the curve of a second simian crease; There—a flat nose, the face’s compliment to the swept up eyes; and There, There, There, There—a thickening in the neck, a harbinger of what was to be. There!4 ♦ ♦ ♦ Jim, Casey, James, Cindy...


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MARC Record
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