Down Syndrome doesn’t Mean Something’s Wrong
Down syndrome doesn’t mean something’s wrong. Jack is now eighteen. We adopted him when he was just one-month old. As with a large percentage of other children born with Down syndrome, Jack needed open-heart surgery as a baby. After recovering from that event, our son has never slowed down.
Most times Jack’s brain functions the way you would suspect it to. However, there are moments when he is extremely lucid and a brilliant flash breaks through. One of those times happened when Jack was about five. Amy had been practicing a particular piano piece and she had spent a significant amount of time over two days practicing the single piece. On the second day, after finishing, she stood up from the bench to walk away. As she began to leave the room Jack walked over to the piano and plinked out the first five notes of the melody in perfect timing. Then he walked away. Shocked, Amy rushed back and tried to get our son to repeat what he had done. Try as she might, he could never do it again. But for a split second a brilliant mind peeked out, then re-hid itself behind his condition.
A while back, Jack had another moment that was out of character for him. Amy was in the kitchen preparing a meal when he walked up to her. “Mom, what happened to me?” he asked. Amy blew off the question—at first—not knowing what Jack was really talking about. “What happened to me? What happened to Jack?” Amy was listening now. She asked him what he meant. “What happened to me? Was I in an accident? Did the car crash? Did somebody hurt Jack? What happened to me?”
How do you explain to your son that Down syndrome doesn’t mean something’s wrong?
Amy became wide awake. How do you answer a question like that? “Oh. You mean about why it is hard for you to learn? Do you mean what happened to your brain?”
“Yes,” he responded. “What happened to Jack?” How do you explain to your son that Down syndrome doesn’t mean something’s wrong?
At that moment the inspiration came. Jack’s mother took him into the other room, sat down with him on the couch and put her arm around him. Amy told our son that nothing happened to him. She told him that God makes everyone a little bit different from everyone else and that he makes everybody so they are good at some things and not quite as good at others. She told our son that God had made it easy for him to love people and that he was better at loving people than almost anybody else she knew. “Sure it’s hard for you to learn,” she told him. “But that was no accident. Nobody hurt you. You didn’t get sick. Nothing happened. Down syndrome doesn’t mean something’s wrong. God made it hard for you to learn but he made it easier for you to love. And that is a much more important job. Your job is to love people and you are the best person I know for that job.”
That was all Jack needed to hear. He had learned that Down syndrome doesn’t mean something’s wrong. Nothing was wrong with him. He had a job to do and he did it well.
I have a friend who has a daughter with Down syndrome and he is infuriated every time he hears the “R” word. “They say ‘retarded’ like there’s something wrong with the person who has the disability!” he says. “Down syndrome doesn’t mean something’s wrong. There’s nothing wrong with them! They aren’t deficient or defective! And when people use that term derogatively in reference to someone else, comparing an idiot to my near-perfect daughter…”
You can understand his point of view. But to all those who don’t have the opportunity of having people like this in their life, to all of those who don’t have any clue how amazing it is, my friend and I would like you to know that there is nothing wrong with Jack. He’s as perfect in what he is supposed to be as anyone could ever be. He has taught me some of the most awesome life lessons I have ever learned. The day we all learn to appreciate life as much as these rare persons with bonus chromosomes do, we’ll understand that Down syndrome doesn’t mean something’s wrong. Then the world will be a better place.
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Jack is rocking that extra chromosome! I’m sure he is full of love, and receiving all of the love he needs from his wonderful family! I hate to hear the ?R word too. It infuriates me! Rock on Jack!
Jack: you are AWESOME
What a wonderful family you have ! May God bless & keep you all.Thanks for sharing your famiy’s story !
Love Jack!! We have one of God’s special young men in our family. He is seven and has a heart of gold!! Wish that all could know the joy that family knows from having this child in our family circle. How lucky your family is to have Jack in your cirlce of love.
My daughter Abigail has been a blessing to me. When the doctors told me that she would have Downs Syndrome (Trisonomy 21) I was positive I was keeping her and nothing was going to stop her. My mother was standing behind the genetic counselling group about aborting because here is the list of issues (nothing was positive) I did my research, and listened to my sister in law who had a sister who had been downs (god rest her soul). Abigail has accomplished so much in her 4 years as of today. She has one more year before she can start school and our goal is main stream classes. She is a god sent and proof that anyone can become whoever they want!
My daughter was just told yesterday that her unborn baby boy has Down Syndrome. She needs encouragement like this. Thank you
To Emily, As sad as I am for the shock that your daughter is experiencing, I can’t tell you how happy I am about the life she will share with her child. I once had a friend at work who approached me and told me that his brother’s wife was pregnant and that testing showed that the baby might have Down syndrome. He told me that the family was talking and they were all thinking that maybe the best answer was to terminate the pregnancy. Though uncomfortable, I didn’t say anything and let him continue. Then he said something that changed my life. He said; “Yeah, they’re thinking about terminating because you have to think about the quality of life for the child.” I smiled at my friend, who knew Jack very well. Then I asked him what it meant to have a good quality of life. My friend said that it meant being happy and enjoying life, not having too much stress and things like that. I told my friend that he had just described Jack. If how much you enjoy life is a measurement of “quality of life” then Jack has the best quality of life of anybody I know. Good luck to you and your daughter, but I’ve got to tell you, we’ve gone through heart surgery and a list of other challenges, but there’s nothing wrong with Jack!
Very touching, thank you for sharing (I found you through ‘love that Max’). I hesitate to question the decisions others have made, simply because it is impossible to know all the factors, but I am completely with you about the quality of life reasoning ~ my eldest son (missing a half of 2 different chromosomes) laughs every day. He loves his life, and doesn’t realise how different he is, which I think makes things as little easier for us as well as him. Other people sometimes look at children (or young adults like the very handsome Jack) and see the disability. Others of us see the child (or individual).
Lucas
What a beautiful moment. Your wife’s insight and reaction made a reallly touching moment out of a very challenging question and what could have led to a challenging moment. Thank you for sharing this moment.