How I Told My Children That Their Younger Brother Has Down Syndrome

Rose Godfrey   February 4, 2015   No Comments

This piece originally appeared in the Appeal-Democrat where, a long time ago, I used to share stories about life and homeschooling and any other such thing that seemed interesting. 

How I Told My Children That Their Younger Brother Has Down Syndrome

We have been learning about chromosomes in our homeschool recently. As often happens, our lessons are initiated by circumstance, and the curriculum is guided by life. After several family discussions, the boys brought their own questions to me one evening.

“Mom, what is Down syndrome?” Max asked.

“Down syndrome is what happens when a person has one extra chromosome,” I said.

“But what is a chromosome?” Max asked.

“Well, a chromosome is kind of like a set of instructions. You know how sometimes I tell you something to do and then your sisters come in and boss you around and each of them tells you what to do, and then things get kind of confusing?”

Both boys nodded vigorously. They clearly understood this part. “Well, chromosomes tell a baby how to start growing inside the mom. When there are too many instructions in there, things can get confusing.”

They thought about that for a moment, and I pulled them closer.

“Open your hand,” I told Max. “You see those lines all over your palm? See how you have one here and here?” Max nodded. Atticus took off the baseball glove he’d been wearing all afternoon, unfurled his fingers and looked down. I traced the lines on his hand then showed him mine. All of us had several creases across our palms.

“Now look at Dominic’s hands, and tell me what you see,” I said.

At the hospital.

At the hospital.

Max reached down and unclenched the baby’s fists. First one, then the other. “There’s only one line,” he said.

“Right,” I said. “Only one. That is something that happens with Down syndrome. It’s not a big deal, it’s just different. Somehow the instructions for how many lines to put on a hand got a little mixed up.

“There are other things, too,” I told them. “See how your little fingers are straight? Dominic’s pinky fingers have a little curve in them. You can also see that his ears are kind of lower than yours, and his eyes look a little different than yours do, too. Now do you think that is a problem?”

They shook their heads.

“Did I ever have Down syndrome?” Atticus asked.

“No, it doesn’t work like that,” I told him. “Either you have it or you don’t. If you have Down syndrome, you have it for your whole life. Dominic will always have it, and you never will.”

Atticus nodded. “Oh,” he said.

“There is one other thing that you can’t really see right now.” I continued. “Dominic’s muscles are a little bit weaker than yours were when you were a baby. He might have trouble learning to do some things that you can do, or it might take him a little longer to learn to do things. You can help him with that.”

“Yeah, because I’m strong,” Atticus told me. He started flexing his muscles to prove his point. Max obviously saw that as a challenge, and soon they were comparing biceps and assuring me they were very, very strong. Boys are like that.

“I can teach him to play baseball,” Atticus said, shoving his baseball glove toward Dominic’s face.

“You might need to wait until he’s a little older,” I told him. “Right now that glove is bigger than his diaper.”

“He can wear it,” Atticus said, giggling at the thought of using a baseball glove as a diaper. Our lesson about chromosomes was clearly over.

There will be more to learn as we go to appointments, schedule tests and navigate a new world parenting this sweet boy who is now and forever a part of our family. As always, we are very blessed

 

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