My heart has been heavy lately. Between Matthew’s evaluation, and several recent thoughtless and unkind words from strangers and friends alike, I’m seeing how our culture sees Matthew. I’m seeing a cold, cruel, world that doesn’t understand my son, doesn’t love him, and refuses to accept him. How do I prepare all 3 of my sons to not only enter this culture but combat it? And, meanwhile, how to I shelter and protect them from hurt and heartache?
. . .
A very dear friend lent me a copy of a book, Onward, Crispy Shoulders! It is a sweet story of a boy named Jimmy, born in 1945 to a homestead family in Alaska. The book is written by Jimmy’s sister, and named for his favorite hymn, “Onward Christian Soldiers.” Except, when Jimmy sang it … you can figure it out.
His parents did not know that Jimmy had Down syndrome until he was 2 years old. A local doctor diagnosed “mongolism” as the reason Jimmy didn’t seem to be progressing at the same rate his cousins were. His parents went home and looked up the term in an encyclopedia, which read:
“Mongolism is a peculiar condition of unknown cause. It is not hereditary. It shows itself soon after birth and is characterized by slanting eyes, broad nose, small head, loose joints, large hands and feet, protruding abdomen, idiocy, and often congenital heart disease and other physical defects. Such infants, fortunately, usually die soon after birth, but occasionally one lives to become an adult. There is no cure of the condition, and no useful treatment.”
To me, this sounds like it must have been written eons ago – but I realized that the late 1940s were only 1 generation before me. Only 1 generation ago, this was how the world viewed individuals with Down syndrome. This was the environment into which they were born. These were the people who grew up with my parents – who we now see in their 50s and 60s in our communities!
Several months later, Jimmy’s family traveled to North Dakota, and had Jimmy evaluated by a specialist in a large metropolitan area. The specialist had the family leave Jimmy with him for the day, then told the family, “Jimmy impressed me. … He’s toilet trained, he’s well-mannered and sociable. His table manners are better than many ‘normal’ kids I know!”
But, then the specialist recommended institutionalizing the boy, as “he will never be able to learn. … If you keep him at home, it will be a detriment to the whole family – especially any siblings he might have. My advice to you is, put him into an institution and forget you ever had him. Go home, have a couple more babies, and move on with your lives.”
When his brave mother found her voice, she managed to say, “I already have two more babies, and they aren’t suffering at all because of Jimmy. He’s part of our family, and we’re NOT putting him in an institution!”
Again – just one generation ago, this was the fate of children like Matthew. It’s hard to imagine – most kids received little or no education, as it wasn’t worth the effort. The expectations placed on them were minimal. Most were institutionalized.
… And today? How has our world changed? How far have we come in 60 years?
As my husband said, “It’s not much different. Today the encyclopedia would read ‘fortunately most of these kids die before they are born thanks to advances in prenatal genetic screening tests.'”
We know so much more about Down syndrome now, though. We know our children can learn, we know people with Ds can accomplish much and contribute much to our society. But, we are still fighting for our children to be recognized as people in our culture. People. People who deserve to live. People whose lives have value and meaning. People who deserve love and acceptance.
People who, if you’re brave enough to befriend, might just teach you a thing or two about what is truly important in this life, and how to enjoy it to the fullest.
. . .
Onward, Christian soldiers, marching as to war, with the cross of Jesus going on before. Christ, the royal Master, leads against the foe; forward into battle see his banners go! Onward, Christian soldiers, marching as to war, with the cross of Jesus going on before. At the sign of triumph Satan's host doth flee; on then, Christian soldiers, on to victory! Hell's foundations quiver at the shout of praise; brothers, lift your voices, loud your anthems raise. Like a mighty army moves the church of God; brothers, we are treading where the saints have trod. We are not divided, all one body we, one in hope and doctrine, one in charity. Crowns and thrones may perish, kingdoms rise and wane, but the church of Jesus constant will remain. Gates of hell can never 'gainst that church prevail; we have Christ's own promise, and that cannot fail. Onward then, ye people, join our happy throng, blend with ours your voices in the triumph song. Glory, laud, and honor unto Christ the King, this through countless ages men and angels sing.