If you didn't find what you were looking for, try a new search!
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?”
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.
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
I cried when he turned one and I knew heart surgery was on the horizon. I cried when he turned five and we were fighting with the public schools. When he turned 11, and…Why did I cry when he turned 11?
I sat next to my dad and said, “My birthdays don’t bother me. His make me a wreck.”
“That’s because you’re getting old.” My father suggested with his normal tact and
Historically, and in my personal lifetime, when a catastrophic event (large or small scale) came, it often brought communities and families together. A commonality rose to the surface: humanity.
This is not one of those times.
The waves of this crisis divide us. Additionally, in this age of “technologically connected” the spotlight on just how divided blinds, enlightens, and devastates.
##
I’m tired. In some ways I feel like the sick I had at the beginning of March just won’t let go. It could also be because of seasonal allergies, my throat appears to be
I think it’s natural, as a parent, to try to – to want to – protect. Therefore, sometimes we don’t address issues, important stuff, that needs to be faced together, because we don’t want to share the burden of knowledge.
That said, If there’s anything I’ve learned as Marcus’ mom it’s this: never assume he doesn’t know or won’t understand.
Early, often, and honest explanations are important to Marcus’ ability to cope with difficult
The thing about What if is that it’s the beginning of…everything. Every successful entrepreneur asks, What if? Every inventor, every teacher, and every person who creates asks, what if?
Then there are the people who nurture people, often (but not limited to) those people who create people, parents we call them, so many what ifs….
What ifs that keep you up at night. What ifs that you celebrate. What ifs you didn’t even think of…
From before our children are even born until forever.
In advocacy we encourage others to think
It's that inclination to rant or work something out that leads me to what I now know is called "self-talk." I also work through questions and answers when I'm working on a tricky problem, be it in reality or fiction, and there's always a lot of self-talk going on in the car with my steering wheel. You don't even want to know what I say to my computer.
Marcus used to ask who I was talking to, now he doesn't bother.
So, when Marcus followed suit with his own self-talk, I wasn't alarmed. And I certainly never thought of it as part of Down syndrome.
“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 realist,” he explained to me, “doesn’t think the worst will happen every
Today I’m going to share a little about loss and what Marcus teaches me about how to deal with death and grief.
