Following the “rules of blog” – I sometimes share moments from then (we have 27 years of material to choose from) and I share moments from now. If I leave you with a question in this down syndrome blog, feel free to ask it. If I leave you with a revelation, feel free to share it. If I post a general rant or big news that has nothing to do with Marcus, well, that’s the blogger’s prerogative.
Here are some blogs or subjects to start with. Or just scroll down for our most recent adventures!
In my young adulthood, I frequently said, “This is no time to panic…” Often at random moments, to no one in particular, mostly at work.
After reading the book series, The Hitchhiker’s Guide to the Galaxy, then seeing the classic BBC TV of the same name, the simpler phrase “Don’t panic” including a cheeky smirk and a deep sigh is a common refrain in my household.
The first time I recall Marcus purposefully using the phrase “Don’t panic” was a memorable audition night in Denver seven or so years ago. He was right.
In 2017, disability advocate Meriah Nichols requested an interview with Marcus for her spotlight “Voices from the Disability Community” series. We made this short video in response. I’m reflecting about
I admit that when Marcus was a child, the future scared me. A whole lot. In fact, I used to cry on his birthday more out of fear than joy. Seems silly now, it’s just – look at that kid! He was so full of life and I had the devil whispering on my shoulder…
Finally, I woke up and noticed the futility of all those years of asking, “What are you going to do when he grows up?”
Not to say that I don’t still hold the Gold Medal Worrier Title. I do. How much do I worry? It’s a tightrope walk, push and fuel enough to fill a black hole, but contained enough to
A Gift From the Universe to Change the World
My son, Marcus, and I have had many writing sessions and meetings with collaborators at our neighborhood coffee shop, particularly while we were working on his first book for children and the accompanying animated short. We also wrote the speech we gave at the United Nations building there earlier this year. Today I write solo and the notebook to my right has the lyric, “The universe is resting in my arms” (from Nina Gordan’s song “Tonight”) written and circled.
Gordan’s lyric took me back to the hours after Marcus was born, when nurses spoke in hushed tones while a social worker hovered outside my hospital room. Worry and doubt lay over us and between us. There was
The sun shone in through the small hopper window near the ceiling. I woke up slowly and watched the sun beams that drifted to the floor. I knew it. I was a mother. From the outside I did not look…ready.
In my heart, I was. I smiled. I quit smoking.
The next week I went to the Doctor’s office for a pregnancy test. I didn’t bother buying one from the store because, well, as I said – I knew.
The test came back negative. The nurse and I spoke a bit about why I thought I was pregnant, her head shook dismissively as she wrote in the chart. I began eating lemons, friends looked at me and shrugged. Three weeks later I bought a pregnancy test at the drug store and it confirmed my knowledge. I returned to the doctor.