And shed innocent blood, The blood of their sons and their daughters, Whom they sacrificed to the idols of Canaan; And the land was polluted with the blood.(Ps 106:38)
Have you ever experienced the feeling of being hit with a two-by-four when no lumber was involved? In my case, I very distinctly remember that effect on hearing these few words about our new little girl, “She has Down Syndrome.” Until this label was hung on one of our children, we did not know much about what it meant. Personally, I had only superficial and inaccurate information.
So, what is Down syndrome? Its name comes from the British doctor, John Langdon Down, who first clinically identified the condition in 1866. The actual chromosomal nature of Down syndrome did not become documented until 1959 by Dr. Lejeune. Down syndrome is a genetic condition caused by extra genetic material from the 21st chromosome. Frequently, it is called Trisomy 21 because there is often an extra copy of the 21st chromosome making three instead of the normal two. There are also other variations depending on where the extra information from the 21st chromosome appears.
Obviously, this extra genetic material appears in addition to the inherited genetic information. So, a person with this “bonus” genetic information will have characteristics inherited from his parents and also characteristics from the added 21st chromosome. This creates large and small differences in many different ways. It often affects a child’s development before and after birth. For instance, many children with this condition will have heart or digestive system problems. In our case, we went through an open heart surgery to repair a hole in an inner wall of the heart. There are a wide variety of challenges depending on how the extra information is manifest in each individual. In our daughter’s case, she started out with very low muscle tone and, as a result, showed very little interest in moving from one place to another. It is common for brain development to be slowed and a difference in the connections between the hemispheres of the brain can cause communication challenges.
All these potential challenges scare many people. I know I was frightened at the possibilities. Sadly, our technology now allows us to act on such fears to identify and give the death sentence to a child that has committed the crime of being detected with Down syndrome. Their innocent blood cries out. In China, this can happen up to immediately after birth while in our country over 90% of such children are prevented from ever reaching the point of birth. Sometimes there is intense pressure on potential parents to abort the problem. Even more tragically, it is estimated that 40% of the time the prenatal diagnosis of Down syndrome is wrong. Fear can cause us to do terrible things.
Beyond the fear, there are other factors that need to be recognized. In reality, every one of us came with our own set of challenges, limitations, talents and abilities. Some of us may be great piano players while others may be like me and not able to keep rhythm with two sticks. Fortunately, musical talent is not required to be allowed to be born and live a more or less normal life. At least, it seems normal to a non-musical person. Others of us enjoy the strange activity of mathematical puzzles. Perhaps math skill, the ability to write poetry or the ability to read should be the criteria for life? In fact, all of us are born extremely handicapped. We all start out deaf, dumb, blind and crippled when it comes to spiritual life and perception.
Increasingly, it seems like everybody must have economic meaning and value or they are considered extra baggage to be tossed aside. A person with Trisomy 21 has tremendous worth but it can not always be translated into dollars and cents. In fact, most of us would be insulted to be evaluated solely in terms of our ability to generate dollars for our family, corporation or government. No, our value is actually realized in our relationships. I’m extremely important and valuable to some people. But, others, such as terrorists would see value in me only as a victim of violence. There are people who have said things like, “No one would want a child with a birth defect.” But, the reality is that there is a backlog of people waiting to adopt such children. And, even if I were totally alone and isolated, I’m incredibly valuable to God. The value of any child can not be determined by looking at a price tag.
Our daughter is now almost 12 years old. And, she is one of the best things that could have happened to our family. As we have invested ourselves in her, we’ve learned the meaning of genuine love – giving of ourselves without expecting anything in return. But, we have received huge blessings from her that are far beyond anything we anticipated. You don’t know what it is to feel welcomed until you’ve walked into a room and heard her shout out, “There he is!!” Every morning, she walks in my office and says, “Hello, Daddy” and something about her spirit infuses me with a sense of her love.
Yes, she has developmental challenges. At the age of two, she could not crawl and I thought it would be a miracle if she ever walked. After she got past the hurtle of crawling, I remember putting her in a harness and holding the straps as we tried to teach her to put one foot in front of the other. But, she did learn to walk and we learned that, for any of us, walking is more of a miracle than we realize. We’ve had help in getting her over the many hurtles. One major help has been prayer and the prayers of our friends and family. Another significant help has been the National Academy of Child Development. This organization has helped ten’s of thousands of children to approach their full potential. Through NACD, we’ve learned about the development of a person’s nervous system and the importance of duration, intensity and frequency in various exercises and learning activities. With God’s grace, the direction of NACD, my bride’s diligence and the support of the family, we’ve seen our daughter blossom and our love grow. There are challenges but there is also plenty of help.
Actually, Mercy Carol is our second angel with this special design. Her older brother, Caleb, also had Down syndrome. But, when we learned that another child was on the way, we never considered prenatal testing. We had already learned what a terrible loss it is to lose a child and it is basically immaterial whether that child has the label of “Down syndrome”. Better to have the shock of being hit with a two-by-four than to miss out on the joy of love, seeing obstacles overcome through prayer and experiencing the incredible wonder of a child.
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