Hello Friends, Here we go! In August of 2015, Chris Burke is turning 50. I had to tell him, and his family, what his life’s work has meant to me and so many others: Open Letter of Gratitude and Well Wishes to Actor Chris Burke Dear Mr. Chris Burke, My son was born in 1990, […].. read more
The Bates Motel asks: “What mysteries do you want to see unraveled for the future for your child with Down syndrome?” That’s a heavy question and one that I hesitate to answer via the internet. But that’s why we’re here, right? To shed light and truth. Yes, it is. SO, I will continue and you can and should look around at the blog-hop links below. This community is nothing if not prolific. :) I purposefully waited to write my thoughts until after attending a webinar provided by the Global Down Syndrome Foundation and DADS (Dads Appreciating Down Syndrome) about research and Down syndrome. Two primary scientists spoke, I think most of it was English though I can’t actually confirm. Some of the words could have been Greek. That’s a joke. Mostly. The information included a lot of talk about chromosomes, and genes, and cells and proteins, especially the amyloid precursor protein. This particular protein is a culprit and connecting factor between Down syndrome and Alzheimer’s disease. That’s the way I heard it anyway. ... But most of that mystery, I must leave to science. I have a squishier wish than that..... read more
Today we talk about Life-Stuff My Life-Stuff. What image do you conjure when you think of the house you grew up in? When you think of childhood and formative years, do you think of hide-and-seek? Where your brother climbed up high (really high) into the storage racks and hid between boxes of product, so he […].. read more
A friend of mine owns a tattoo shop. Next to his shop is a bar (as is the custom). He let us know that said bar has certain karaoke nights. So Marcus and I went to check it out. I was nervous, as I always am, when the evening began. Nervous about karaoke? Yes. But […].. read more
At 7 months pregnant, there came a night when I woke up in terrible pain. I climbed into our stick-shift car, which I did not know how to drive, and started down the road. It wasn’t pretty and probably didn’t sound too good, the car either, but we (the car and I) got to the hospital in time for me to pass out in a wheelchair just inside the emergency room doors. That was nearly 23 years ago.
Two months later I gave birth to a beautiful boy and I still find myself winging it.
My son has grown up to be an amazing young man. He loves his job, attends acting classes, hopes to put his own musical on Broadway, and doesn’t seem to mind that he has an extra chromosome in his DNA.
I didn’t know how to raise a child with Down syndrome any more than I knew how to drive a stick-shift. But we’ve cruised through the years, pushed over a few roadblocks and taken several detours. We’ve learned many lessons that have been more special than the needs.
The stories from the early years and the joys and challenges of today are featured in the Grown Ups & Downs blog. Check out some of the resources and on-line friends we’ve made. Wander back to the middle-ages and meet a special Prince from the forthcoming novel The Innocent Prince. And, of course, join the conversation on any of our social plugins.
See you soon,