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!
At a very young age, I realized, “Everybody’s got something.” The “something” is the hidden battle, the hard bits, that may or may not be public. A secret, a trauma, a disability, a hardship, a “something.”
When a was, I don’t know, like 10…? Two neighbor kids “played school” and taught me my home phone number. Yes, 10.
I was a conundrum. My family often described me as “7 going on 30.” I was cynical and had an early mastery of dark comedy. I was a thinker. Yet, I struggled with some very basic, academic tasks. Anyway, these two sisters thought it was ridiculous that I didn’t know my own phone number and sat me down until I got it.
In childhood, I attempted invisibility and was happy with it, but sometimes I couldn’t stop
Marcus being Orange
The picture above is from a few years ago when during a presentation put on by the actors and teachers of the Ollie Webb Center, the actors were asked to show: “Orange.”
This was in 2014 and is still one of my favorite *Marcus is who he is and take that world* moments. I’m going to tell it to you again today, from Marcus and The Loud Mouths Festival.
Then he said, “That’s not a ball catcher thingy, that’s an antenna!” He demonstrated on his head and passed
The truth is
people born with 47 chromosomes have been locked away
left alone and died alone
in voids of confusion and loneliness
throughout history and throughout the world
The truth is
Some still do
do not preclude a human from learning
from reaching for more
Science can see this trisomy
before a mother
feels her child developing
Science cannot see possibility
Science cannot tell the future
Neither can you
Neither can I
The truth is I need help
to facilitate my son’s reach
toward his potential
The truth is he has dreams for his future
do you have dreams, too?
The truth is he is no less human
no less worthy of love and respect
and a chance
He is no less than any other human
The truth is the future sometimes scares me
The truth is I also
in that antiseptic room
your tiny chest opened
once considered a miracle
in my wallet
For enough life
whatever we get
should be enough
Is that possible?
all we get is
a few precious minutes
here and there
make minutes matter
beautiful beating heart
I keep watching
keep watching you
and your heart…
So, in April I tend to go to the hard moments that came from the April’s before, including handing my sweet baby over to heart surgery all those years ago. We had a long reprieve from even appointments, but now they are back into the mix and then I obsess…maybe even without cause.