Siblings

We went back and forth as to when and how we should tell the children that John has Down Syndrome. Did it matter? They are so young and innocent. They had NO clue that John was different. Why did they need to know? My biggest concern was that I did not want them to find out from anyone else but us. Everybody else either knew or would eventually know just by looking at John, but not his siblings. They adore John Carroll. I did not want them to worry about John or feel sorry for him in any way.

We told them one night during dinner. I said something like, "John has Down Syndrome. It means that it is going to take him a little longer to do the same things that you do."

Is it really that simple?

Yes.

"Difference is an Artist's Game"

By Clara Sigmon, a 13 year old sister to David who has Down Syndrome.

"The best things in life come to us as gifts."

"To paraphrase G. K. Chesterton, if you plan an adventure, you are not on an adventure. If you engineer joy, it is not joy. The best things in life come to us as gifts. If you plan a child, that child is but an egotistical extension of yourself, your vanities, and your caprices. The family is good for us, Chesterton says, precisely because it does not conform to our wishes--because every child born to us comes to disrupt our routine. God gives us children to break open that hard shell of self."

~Excerpt from "What is a Child Worth?" by Anthony Esolen (Columbia Magazine, January 2010)

His name is John Carroll

I thought for sure John was going to be a girl. We (okay it was Bobby) decided not to peek and find out the sex before birth. Bobby made the announcement, "It's a boy!" That was hard to adjust to. Bobby also said "Hey, look at that little fat roll on his neck." Then John was placed on me and I held him for the first time. I kissed his little perfect round head and noticed that the tops of John's ears were folded over. These were passing observations that I put little stock in as I was still trying to adjust to the idea of having 3 boys. They took the baby over to the heater while our Dr. gave him his first exam. Bobby and the Dr. were talking and the Dr. was pointing out parts of the baby to Bobby. (Again, totally normal because Bobby is fascinated with medicine and biology and probably missed his calling to be a Dr.) After a couple of minutes Bobby came over to me and said "Did you hear that? The Dr. thinks he might have Down Syndrome."

Stunned. As if someone had crashed symbols together inches from my ears. "Down Syndrome, Down Syndrome, Down Syndrome" kept resonating in my ears. Not sad. Never sad. Not disappointed, nor scared. Simply stunned.

Our Dr. was wonderful and explained the markers (physical features) that led him to believe our son had Down Syndrome. The roll on his neck, his folded ears, the sweet flat spot between his beautiful almond eyes (a great spot for kisses), the single palmar crease across the palms of his hands, his sandal toe, protruding tongue and low muscle tone. The evidence was convincing and we knew that the blood test (karyotype) was a mere formality. A pediatric specialist was called in to confirm the findings. This Dr. was very clinical and straightforward. He recited the markers and said, "I would be surprised if this baby did not have Down Syndrome" and left the room.

From this point on the entire medical staff seemed to take on a somber mood. The joking and smiling stopped and we were left alone. Mom was with us through the birth and diagnosis. She listened yet never flinched. I believe from the moment she learned of John's diagnosis he stole an even larger part of an already smitten grandmother's heart. She left us alone and took the charge to share our joy and surprise with our family and friends.

So there we were, Mom, Dad and baby together and alone at last. The clanging could still be heard yet it was a bit softer and slower. "down syndrome... down syndrome... down syndrome..."

For a couple of hours our baby remained nameless. (Not typical for us). Bobby was holding our son (actually I don't think he had put him down for those first hours) when he turned to me and said, "His name is John Carroll." To which I said, "Yes." "John Carroll" now resonated and seemed to muffle the clanging a bit.

The name was perfect for so many reasons. John Carroll, because of Pope John Paul II whose given name is Karol. John, because of the disciple "whom Jesus loved". John Carroll was the first Catholic Bishop in the US whose family Bobby is a direct descendant. John, because it is my father's & brother's name.