My Little Extra
I call Jonathan my little extra because he has an extra chromosome —you know, that extra one on the 21st pair that causes such panic in parents-to-be. 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.
Expecting my eighth child in 1992, I’d prepared my own 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. Only after we sent out the announcements did we learn his name meant “Gift of God.”
There were many things I learned “only after.” Life got pretty hectic because Jonathan came close to dying. With the same care accorded a crown prince, the medical community mobilized to meet his needs. Jonathan’s teeny organs were patched together by Dr. Michael Harrison of UCSF-such a humble and gracious person, I had no idea he was a world famous surgeon. Only after Jonathan recovered did I learn that until recently many Down syndrome children were denied lifesaving procedures, sometimes even by their parents. I was grateful that Jonathan was born at a time when the medical profession—at least once he was out of the womb —respected his worth as a person as much as they would any of my other children.
Experts told us we would need to work a little extra to help Jonathan realize his potential. What they didn’t know was how God would use Jonathan to help us realize our own.
I remember us all encircling him, cheering as he ever-so-slightly lifted his wobbly head. We taught him how to sit, how to crawl, how to feed himself—the things other children learn without much help at all. My children grew more caring and compassionate every day. A stronger unity was built in our family.
That’s why we all understood when one day 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 our daughter Madeleine. Then by Jesse, Daniel and Justin, three 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.”
Yes, parenting them has been more of a challenge. But with the adversities has come an expansion of my heart. The tenderness I feel for Jonathan has generalized to the wider population. I am a better person because he is in my life. As Martin Luther said so well, “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 NIV)
I suppose most have understood this to mean that the work of God would be displayed when Jesus healed the man’s blindness. I see it differently. After all, Jesus didn’t say the work of God would be displayed in his healing. He said it was 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 in those who might otherwise have had no reason to give up 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 twenty-first chromosome to give me more than I would ever have asked for. He offered me a little extra. I’m thankful for that.
Click on the image below to link to
a special Mother’s Day Down syndrome Celebration.
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-and a comprehensive list of resources
and links can be found here.
