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Grown Ups and Downs – A Down Syndrome Blog 2018-02-07T18:31:47+00:00
mardra and marcus

In fact, sharing the theme of “What are you going to do when he grows up?” Has been my honor on sites across the globe and also ‘live’ at a Listen to Your Mother Event.

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!

About Being Kind, About Judgy People, and Relationship Hairballs

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

Actors Among Us

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.

THE BEST PART Came the second night. (Yeah, I saw it twice.) One of the prompts to the actors went like this: Jim (the director/teacher) took one of these: ball catcher thing

Then he said, “That’s not a ball catcher thingy, that’s an antenna!” He demonstrated on his head and passed

Another Poem About the Truth

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

47 chromosomes
do not preclude a human from learning
from feeling
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

April is…

Your Heart

in that antiseptic room

your tiny chest opened

 

once considered a miracle

living

recovery

 

now science

medical

possible

 

in my wallet

a diagram

a heart

with arrows

circles

concerns

 

I run

with you

running you

through life

 

For enough life

whatever we get

should be enough

 

Is that possible?

probably not

we take

create

pack in

every minute

 

all we get is

a few precious minutes

here and there

 

you

make minutes matter

you

bring joy

you

create hope

you

teach purpose

you

 

your heart

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.

As I have said before, I am not a poet. But I do like to write poetry on occasion. Did you know April is

Events

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