Thursday, October 06, 2011
6:00 AM Jennifer Hudson Taylor 9 comments
Please welcome Guest Blogger, CJ Chase
“Me?” My 13-year-old son watched me through gray eyes that tilted up at the corners. He gets that color from his grandfather, but the shape—one of the defining characteristics of Down Syndrome—matches no one else in the family.
That morning, several weeks before Easter, he waited expectantly for my answer. Our small Sunday School class—just him and me—periodically read the communion story from his illustrated Bible, most recently that morning. Now he was asking my permission to join the rest of the church in communion for the first time. Was he ready? He could answer my questions, but was it rote memory or did he understand? We’ve long realized he knows more than he is able to express in words.
Down Syndrome is a chromosomal abnormality that affects physical and mental development. People with DS often suffer from a host of ailments, such as heart problems, respiratory issues, hearing difficulties, poor vision, low thyroid function. But there is good news. Early treatment of the physical symptoms is raising both the life expectancy and the IQs of people with DS.
Chances are you’ve met someone with DS. After all, according to the National Institute of Health, it is the most common single cause of birth defects. Still, I never expected it to happen to me.
Those first few days and weeks of Nathanael’s life passed in a blur of specialists and monitors, oxygen tubes and feeding tubes. Nathanael was discharged from NICU after four weeks, and while his improved health relieved some of our stress, the real work for us was just beginning. His low muscle tone, another side effect of the DS, prevented him from breastfeeding, so I pumped and then fed him via a bottle—the feedings lasting as long as two hours per bottle. In order to prevent a recurrence of his respiratory complications, he couldn’t go out in public. And did I mention we also had an active two-year-old at home?
Recently I asked my older son what it was like to have a brother with special needs. Did he wish for a sibling with whom he could have a “normal” brother relationship? Sure, he admitted, it is hard sometimes. But he also wouldn’t want any other brother in the world. Nathanael has “a gift.”
Indeed. We are all better people for having known Nathanael. Unable to make the same kinds of judgments as the rest of us, Nathanael lives in a slightly different, slightly better world—a world where race, weight, and intellectual abilities don’t matter; where you join in the laughter whether you understand the joke or not; where all you really need to be happy is pizza, chocolate milk, and music.
I’ve long believed Nathanael is closer to God’s heart than the rest of us. Jesus said we are to come to him with the faith and trust of a child. And that is exactly how Nathanael took his first communion—with wonderment and a smile on his face.
About CJ Chase
Winner of the 2010 Golden Heart for Best Inspirational Manuscript, C.J. Chase likes to make her characters solve mysteries, wrestle with the difficult issues of life and faith, and fall in love. All wrapped up with a happy ending, of course.
Like a character in one of her novels, C.J. took a circuitous route to her own happy ending as an author. Armed with a degree in statistics, she began a promising career in information technology. But after coworkers discovered she was a member of that rare species--a computer programmer who could also craft a grammatically-correct sentence--she spent more time writing computer manuals than computer code. Leaving the corporate world to stay home with her children, C.J. quickly learned she did not possess the housekeeping gene, so she decided to take the advice of her ninth grade English teacher and write articles and stories people actually wanted to read.
C.J. lives in the swamps of Southeastern Virginia with her handsome husband, active sons, one kinetic sheltie, and an ever-increasing number of chickens. When she is not writing, you will find her gardening, watching old movies, playing classical piano (badly) or teaching a special needs Sunday School class.
You can visit her cyber-home (which is much cleaner than her house) at www.cjchasebooks.com.