By Father Dennis Meinen
View from the Scooter
Do you know someone with Down syndrome? For centuries people with Down syndrome have been alluded to in art, literature and science.
It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.
Down’s syndrome (also called Trisomy 21, or formerly Mongolism) is a congenital disorder caused by an extra chromosome on the chromosome 21 pair, thus giving the person a total of 47 chromosomes rather than the normal 46. With modern medical care, most persons with Down syndrome – except those with major heart defects that cannot be corrected by surgery – live into adulthood. The majority can be taught to contribute usefully in the home or in a sheltered working area or living environment after they are grown.
I know of a family who was notified that the child to be born to them would have Down syndrome. They were very concerned and wondered how their lives would change. In my curiosity, I wanted to discover the facts of this syndrome. HS Schulte said, “As I began my journey down the path of raising a child with Down syndrome, I recall reading a poem that is still precious to me today. It is entitled ‘Welcome to Holland’ by Emily Perl Kingsley. Because those words meant so much to me as a mom facing the unknown, it helped me to face the uncertainty of having such a child.”
I want to tell the story by Emily Perl Kingsley:
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
“After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ‘Welcome to Holland.’
“’Holland?!?’ you say. ‘What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’
“But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
“So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
“It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts.
“But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.
“But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”
Finally, I want to tell a story with all the excitement of a basketball tournament game with only seconds to play. The Diocese of Sioux City is a sponsor of the NAIA Special Olympics. It is there we see disabled kids, many with Down syndrome. College students who are preparing for the NAIA tournament take time out of their preparations to meet with disabled kids, teaching them how to shoot baskets, run races and give interviews to the press.
One time, one little boy was dribbling the length of the court to heave a basketball in the direction of a mini hoop, not far off the ground. As he was just about able to launch the basketball, his pants fell down. With eager longing, he gave a Michael Jordan upward push, oblivious to the frantic assistance of his helpers. As he raised his arms in triumphant fashion, he knew the excitement of all the fans was because of his athletic prowess and nothing else.
Father Dennis Meinen serves as chaplain at Holy Spirit Retirement Home, Sioux City, for Boy Scouts and Girl Scouts in the diocese and Calix and Faithful Friar of the Garrigan 4th Degree Assembly of the Knights of Columbus, Sioux City.