May 5, 2010 12:24 PM
Can a disability diminish the value of a life?
I first published this article in World Magazine, October 11, 1997:
My little extra
Lessons in love from an unexpected teacher
by Barbara CurtisI call Jonathan my little extra because he has an extra chromosome - you know, that extra one on the 21st pair that causes such consternation in most potential parents. Down syndrome, it's called-named after the doctor who first "discovered" it. Trisomy-21 in modern genetics - like I said: Third chromosome, 21st pair.
Before he was born in 1992, I'd prepared birth announcements with a verse from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." That's how I had felt about each of my children. And that's how I felt when they put this new little baby in my arms and I could see he looked, well, just a little different.
Tripp said we'd name him Jonathan - "Gift of God."
Those first days were difficult: Jonathan came close to dying. His teeny organs were patched together by Michael Harrison, a humble man and eminent surgeon. After Jonathan recovered, I learned that until recently many Down syndrome children were denied lifesaving procedures, sometimes even by their parents.
I was grateful Jonathan was born at a time when the medical community-at least once he was out of the womb-respected his worth as a person as much as any of my other children.
Seeing Jonathan spend his first month of life in intensive care was hard. It was harder still to rush him to the hospital-six times in the next 14 months. But with the help of our church community, we managed to get through those times.
Throughout this period, our daily life with Jonathan was pure joy. He needed a little extra help to meet his potential. Although remarkably undemanding, these babies need stimulation to meet normal developmental milestones. Perhaps because we so rejoiced when he was home and healthy, we relished our new responsibility. We'd gather in a circle on the floor around Jonathan and wait for the slightest lifting of his wobbly head. Then we'd cheer as though he'd scored a touchdown. Knowing speech could be a problem, we learned a child's vocabulary of sign language. My older children grew more caring and compassionate every day. A stronger unity was built in our family.
That's why we all understood when my son Matthew said, "Wouldn't the world be a better place if everyone had a brother with Down syndrome?"
Wouldn't it indeed?
Jonathan was followed a year later by Madeleine. Then by Jesse and Daniel, two baby boys with Down syndrome we adopted. When people express surprise that with our large family we would take on two more with special needs, I tell them, "When we found out what a treasure we had in Jonny, we decided we wanted more."
This is not an easy concept for most people to grasp-even Christians. One of the great sorrows of being a parent to differently-abled children has been the inevitable isolation. No matter how much I regard Jonathan, Jesse, and Daniel as special blessings, it remains difficult for those on the outside to share my enthusiasm.
Yes, it has been a challenge. But with adversity has come an expansion of my heart. God has helped me not just to accept, but to rejoice in his plan for Jonathan. Martin Luther once said, "For whoever believes, everything is beneficial and nothing is harmful. For those who do not believe, everything is harmful and nothing is beneficial."
Remember when cynics presented a blind man to Jesus and asked who had sinned, the man or his parents, that the man had been born blind? Jesus answered that neither had sinned, "but this happened so that the work of God might be displayed in his life" (John 9:1-3). Usually we understand this passage to mean that the work of God would be displayed when Jesus enabled the blind man to see. But maybe it means just what it says: The work of God would be displayed "in his life."
That blind man was once a baby and a growing boy. For years his needs had had an impact on his family, his friends, his teachers, his community. Surely the work of God was being revealed each day in the growing compassion and wisdom of those who might otherwise have remained stuck in their own self-centeredness.
God doesn't waste a life he has given. I know as surely as I know each dimple on Jonathan's cheeks that God has used that 21st chromosome to give me more than I would ever have asked for. He offered me a little extra. I'm thankful for that.
Posted in Disabilities, Down syndrome, Family, Inspiration, Pro-Life Issues | Permalink
Comments
That was beautiful. It made me cry, I guess because it is a lesson I have such a hard time learning. I have four beautiful children ages 4 and under. At times the demands of leaking diapers, shoes that can't be tied, toys that are never put away, and never shared freely, and mouths that are always hungry can be such a challenge for me. From a slow learner, Thank you for pointing out the good things these challenges bring into our lives and how richer we are for them!
Posted by: Diane | May 6, 2010 3:17 PM
I have a 2 year old boy with Down syndrome.Your words made me cry. Thank you.
Posted by: mommy N | May 6, 2010 11:24 PM
