Trey is his name. He is our fifth child, and third boy. Trey has Down syndrome. He entered our world on January 17, 2008, and we had no idea when he was born that he would have Down syndrome.
My first response was, “oh. . . , well, okay.” I experienced acceptance, but not thankfulness. It was a while before that came. When I finally realized what an awesome gift his birth was to us, I was incredibly moved that God would give me such grace. His presence in our lives has profoundly impacted my world.
I didn’t know that Trey would force me to look at the kind of wife and mom I hadn’t been. I didn’t know he would help me see what a blessing all my children are. And my husband: still here after all these years, despite being married to me. I didn’t know Trey would cause me to lighten up, reviewing my choices in ways that nothing else ever has.
Down syndrome is one of the most common genetic conditions accounting for about 1 in every 800 births. Babies born with Down syndrome are usually mildly to moderately retarded.
I learned that “retarded” is a clinical diagnosis. I didn’t know that before. We’ve all heard the sneers about “being retarded” or “that’s so retarded”. It is entirely too acceptable, and I have been guilty of saying just that. I don’t let my children call one another “stupid” or say, “shut up”, so why I ever said such a thing, I don’t know.
Down syndrome is on the cellular level. There is no “cure”. I’m finding there is much being done learned about the capabilities of people with DS, but not a lot of money in research in comparison with many other conditions.
To understand what is going on at the cellular level, I will try to simply explain it. Our genetic makeup is found in every strand of hair, in our sweat, in our spit, in our dead skin that sloughs off our bodies. Just as our fingerprints are unique, our genetic makeup is also unique. It is encoded, or specified, through our DNA. This information is carried on 23 pairs of chromosomes. When conception occurs, we receive two complements of genetic material, one half from our dad, and the other from mom, completing the “pairing” for a total of 46 chromosomes. It contains such complex information as what color hair will I have, how many eyelashes will I have, how tall could I be, how big could my feet grow, where and how does the spine develop, does the heart close up properly, will the lungs be fully developed. . .
Sometimes, however, at conception, either the sperm or the egg has improperly divided, and the 21st chromosome hasn’t split properly, so there is an extra copy of some or all of this genetic information. When the two come together (sperm and egg), there are 47 chromosomes in the very first cell. This is Down syndrome in it’s simplest form. Each successive division will give the person 47 chromosomes in every cell of their body–the heart, the lungs, the brain, the toes, the pinky fingernail.
The extra information somehow gives each individual their own uniqueness, because, they are their parent’s child, but some commonalities also do exist within the individuals containing 47 chromosomes.
You may notice a similarity of expression–but not always. They are each a unique human being.
You may notice a similarity of height–but not always. They are each a unique human being.
You may notice a similarity in speech–but not always. They are each a unique human being.
It is said again and again, people with Down syndrome are more like other people than different. They have two eyes like you, two ears like you, ten toes, ten fingers. . . .
October is Down syndrome awareness month. See about getting connected if you will. There are organizations for educating the public about Down syndrome that would appreciate your help.
We love our beautiful boy.