Come So Far And Yet

 

Just less than thirty years ago, I was handed a book written for parents of a new baby with Down syndrome that began with, “Do not put your baby in an institution.” Literally, this was the first line of the book.

Still, a social worker asked if we were “taking the baby home.”

Sigh.

Today I know women who coach doctors and nurses about how to share information about possible, potential, and available, instead of “put away.”

Be Beautiful, Be Yourself

Last weekend Marcus and I attended an

Some of the Marcus Equation

When you have a child with an intellectual disability the tests come early and often. Medical tests, intervention tests, IQ tests.

IQ tests are the worst.  On the parents.  I’ll never forget Marcus’ first IQ test, he was three. He communicated mostly with action/expression and sign language. But not that day, well I take it back. He was clearly communicating, just not compliant. An important differentiation that, as his mother, I could see but the Ph.D. in the room clearly could not, Or did not.

One moment that stood out, the psychiatrist held before Marcus a doll with its head off, laying

When it Comes to my Son with Down Syndrome, I’m Not an Optimist

“We can still come back and win. It’ll only take 2 touchdowns and a field goal,” I said to my grandfather during one of the many brutal football bowl games of my childhood.

“No. They won’t.” He sat with his arms crossed, defeat accepted, but he still watched the game to the end.

“You’re a pessimist.” I moved to the floor in front of the TV.

“I’m a realist,” he said.

A Pessimist, an Optimist, a Realist

“A realist,” he explained to me, “doesn’t think the worst will happen every

2019-07-07T19:22:54-06:00Categories: Grown Ups & Downs|Tags: , , , |6 Comments

Eternally Grateful for the Ending that Wasn’t

They all lived happily ever…pleased me as a child. Even as an adult, I like a story to have a “happy ending.” In real life, though, how many happy endings are there, really? I shudder to think.

I often Focus on Beginnings

For example, the beginning of Marcus, my first and only child: A beautiful (of course) son, born with deep blue eyes (which stayed blue), a heart defect (which needed repair), and a triplicate of the 21st chromosome.

When he was nearly two years old and weighed only 18 pounds, I carried him