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!
I wish had a time machine.
One where I could stop time for just myself. I could work. I could create. I could sleep. And then, when I step back into the spinning world, I would spend new time with those I care for in a most enjoyable and leisurely way. Oh, I could give so much more!
In the machine I could learn! I could learn between the minutes to be better prepared for the next. To improve. To grow.
It’s the biggest cheat I ever wished for.
Of course, I would greedily want more; I’d next take people I love along into the magic portal where time couldn’t touch us.
We’d create stories, music, and other art. We’d travel to spots of inspiration. We’d play. We’d
WOW – Let’s Flashback, this post originally went live 5 years ago, November 2014. So much still applies, I’m reposting it.
Via Puppets in the Early Years
When Marcus was much younger, just beginning school, he used to form his hands into puppets and they would chatter away. Not all of it was understandable, but words slipped through. One of his early teachers suggested we discourage this, but we resisted. I felt then that if that’s how he wanted to process and share his world, so be it. Any communication device was fine by me. She was not a “roses are red” sort of teacher, so she agreed to help him understand social norms but not discourage the “puppets” overall. (Check out the
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.”
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 important event hosted by The Global Down Syndrome Foundation, an organization founded out of the emotional and intellectual collision of love and anger. Many of us relate to this emotional state. More
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 brother, Tim (who took this photo) and my dad are both “Futurists” – basically it means they are optimistic about the future. And they are both, truly, visionary men with a keen eye for possibility in unique areas with incredible ideas.