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

Dignity, Risk, Harness, Support

As for me…

 

To be clear, When I look at this view I am not filled with excitement or exhilaration. I am filled with fear and anxiety.

It’s said that fear can’t kill you…I wonder.

I’ve mentioned before about my father and brothers, they often make decisions pursuing pleasure, whereas I often make decisions based on avoiding pain. In fact, I wonder if we even process pain, and the memory of pain, in the same ways.

In the strengths finder application, my

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

The Storyteller and the Truth – Part One

 

I remember emotional points, touch the bruises, and swim in the revelation. However, I have a terrible time trying to remember dates. At what age did I learn to ride a bike? When was my first road trip? Even important moments, like when did my son take his first steps? When did he begin using complete sentences? Or when did he start, really start, to tell me the stories that play through his imagination? Marcus just turned 27 and I think I’ve been saying “for over ten years” for three, maybe four, years.

I could dig back into the notebooks.