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!
For the first 21 years or so of Marcus’ life,
“Down syndrome” didn’t really come up,
and I kept our privacy setting as restricted. Not that I was hiding, I just wasn’t sharing. Why? Well, one reason is because most of those years were pretty, how shall I say this?
Not to me, you understand. But to an outsider. Seriously. What exactly is so exciting about going to work and going to school and living in Middle America? Not the stuff of reality TV programming. And I was cool with that. This is how it is for most families, regardless of their child’s abilities, most of life is spent just living.
Not only was I not sharing, I also wasn’t really seeing/listening/reading about any other families, locally
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
In my teen years, I thought love was all fire and ice. Love was meant to be an extreme emotion full of passion, rage, jealousy, and greed. Love meant big fights and deep pain, only real love caused the kind of pain that proves how true the love is.
Obviously (or not) I didn’t have many, maybe any, positive relationship role models at the time. So, I relied on music, movies, and books for love directions.
Therefore the tropes of forbidden love, violent, and reckless love were bought and sold by me as the truth. I thought jealousy = proof of true love. And possession, including the desire to possess me, was emotion sprung from passion and, again, true – only true love.
This set of conclusions did not
The Message that The Internet is Forever…
While speaking at a Listen to Your Mother Event, I met a mother whose middle son died by suicide. She bravely shared about how his life was cut short because of two bad decisions.
When a picture he shared privately, became public (after being tormented with the possibility for no one knows how long) he decided that humiliation was more than he could bear. His life ended at aged 15.
How many times have we told our children, “The internet is forever.” & “You can’t take it back.”
This tragedy brought to me the realization we must also tell our children: “And yet, nothing on the internet is worth dying for.”