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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!

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

Brushfield Spots – The Coolest Genetic Trait Ever

I was one of those moms that stared at her baby constantly. I marveled at him. Luckily, my friends also enjoyed this pastime. Maybe because we were broke. Staring at Marcus staring at the ceiling fan, or lying next to him and staring at the ceiling fan, was a hobby we could all afford.

Also because he was beautiful, he smiled readily, and his eyes sparkled.

I watched his deep blue eyes, expecting them to change into brown, or hazel, or in-between-green-and-something-else, like mine.

After he turned a year old, I celebrated the knowledge: Those blue eyes are here to stay!

A few months later he was at an evaluation of some sort with several clinical and scary looking people and one of them used the words: “Brushfield spots.”

Five Awesome Advocacy Videos – Plus One More!

From the Many Awesome Videos Shared on or around World Down Syndrome Day 2018 (WDSD18)  

Here are five (plus one) you should check out for sure!

Dear Future Mom

CoorDown has done it again with another original video. These are the folks who brought the world “Dear Future Mom” four years ago. In fact, let’s start with that one because, yeah, you’ll see:

 

So great.
I will tell you, though, Marcus is not a fan. He feels that the sad music (minor chords, ya know) do not accurately portray the message of the film.

Lea Goes to School

This Year’s CoorDown  message is: #IncludeUsFromTheStart. A completely different storytelling methodology with story-book animation. I love it, too! Check it out:

I have more to say on this (Oh – Look surprised why don’t you?) But today, let’s

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