Wednesday, March 21, 2012

Celebrating your Crown


Today we celebrate.

We celebrate life.  We celebrate love.  We celebrate patience.  We celebrate our differences.  We celebrate value.

We celebrate World Down Syndrome Day.

We celebrate YOU, my precious child ...

We celebrate the gift that God gave us when He created you, Jack, and the many other special children with three 21st chromosomes.  And, we celebrate the immense JOY and LOVE packed into that extra little chromosome.

Jack, from the moment you were created, you were meant for special, wonderful things.  You carry more than an extra chromosome, my child.  You carry a light that I have yet to see in any other.  You carry my heart and my soul.
And you wear a glorious, marvelous CROWN ...

On the day that we met and I put you to bed,
I noticed a crown on the top of your head.

It was made up of sparkling, glimmering things
like moonlight and fireflies, and dragonfly wings.

I always knew just what your crown meant.
It said that you were MAGNIFICENT.

... and it means, like a star,


With your crown made of glittering, high-flying things,
you've got wind in your pocket, your wishes have wings.

You can run like you mean it ... so, let the wind blow ...
There's just no telling how high you can go!

Whatever it is you choose to do,
no one can do it exactly like you.
Ride on the big slide!  And if you fall down,
remember your glorious, marvelous crown.

It won't flicker or fade.  It won't dim.  It won't leave.

All you have to do is BELIEVE.

Do you, my child?  I hope that you do.
The world is a wonderland waiting for you.

And you get to share it with all your friends, too!
They each have a crown that is faithful and true.

No one's is brighter, no one's is duller.

(from Nancy Tillman's The Crown on Your Head)

We adore you more than you'll ever know, sweet Jack.  We pray that you always know how much you are loved, valued and honored.  Our hearts have been lifted and our lives have been enriched by your presence, by your true colors,
 ... and by the glorious, marvelous crown on your head

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the CROWN of life, which God has promised to those who love Him."   - James 1:12

Wednesday, March 7, 2012

End the Word

Apparently, much of America needs to go back to high school English class. As a college English major, one of my biggest pet peeves of all time is poor word choice or word misuse.  Since Jack's birth in 2010, one overly common and improperly used word in particular has roused my attention ... and anger.

You fellow Ds blogging mommies out there know where I am going with this.  (Just sit back, enjoy, and share in my venting ...)

However, for some of you, here I go, climbing up on my good 'ole soapbox again.  Dislcaimer: It is not my intention to sound insulting to the many of you who think carefully before speaking to anyone, especially when speaking to parents and relatives of children with exceptional needs.  But, clearly several people out there could still use some instruction in this department. 

So, here we go ...

How about a little vocabulary lesson, America?

According to the online Merriam-Webster Dictionary, the adjective form of THE word is:

  retarded (adj): slow or limited in intellectual or emotional development or academic progress

No where there does it say "stupid", "ridiculous", "brainless", "dense", "dumb",    "idiotic", "meaningless" or "moronic".  So, why do so many people still use the r-word when describing themselves (or others or situations) as such?

The definition may in some ways describe my son Jack. He is developmentally delayed in some areas, but emotionally and socially he is well beyond his typical peers. And, I have known plenty of "academically limited" people without any medical diagnoses in my time, and no one ever called them "retarded."

The truth about the r-word is that it is no longer even accepted as proper medical jargon to describe individuals with cognitive disabilities. And, when you use THAT word in everyday language to describe someone as "ridiculous" or "stupid," most likely you are (1) offending someone around you (like ME and my son), and (2) you're in fact making yourself look like the one who is "mindless."  The English language prides itself on being a conglomeration of many different languages (mainly Anglo-Saxon Germanic but with hints of many Romantic languages, just fyi ;) ... so there are plenty of other adjectives out there to pick from, people.  Ones that are relevant to your situation at hand, and ones that won't make me cringe and want to high five you {in the face}. 
(Did I actually just type that out loud?!?!? ... Yup, I did.)

My son Jack is many things. 
He is a beautiful 21-month old boy. 
He is happy.  He is healthy.  He is funny. 
He is giggly.  He is loving.  He is giving. 
He is opinionated.  He is smart.  And, he is very cute. 
What he IS NOT is an "idiot" or a "moron." 
Yes, Jack does have Down syndrome, but he is also the very air I breathe
So, when I hear you or someone else say THAT word, it takes the breath right. out. of. me.

Today, March 7, 2012, is this year's Day to Spread the Word to End the Word.  Please be a fan of RESPECT, and visit this site to pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.  I beg you to share the knowledge of this movement with all your friends, families and coworkers as well, in a united effort to end the pain that this one little word can inflict. 

Learn it and live it.  Like it, share it on facebook.  Email it to friends.  Blog about it.  Have a private, educational, constructively criticizing (but polite) conversation with a repeat word misuser. 
Be an adult, and stand up for what is right. 
And for the love, please just think before you speak.

Do it for the millions of people out there affected by this word.  Do it for Jack.

To this day, I hear people say the r-word around me and, believe it or not, some still even say it to me without even thinking about the pain they are causing.  At these times, I politely pull these individuals aside to educate them about their poor word choice {misuse} and to tell them that, although I know they did not mean for it to be, it is incredibly offensive and hurtful to me and my family.  Even so, I still continue to witness repeat offenders in my very own life by some of the people closest to me, from coworkers to friends in my social circle.  I know it's "just a word" to you, but if it is "just a word," then just stop saying it.  It's that easy.  To me, that word is offensive.  It is derogatory.  It is NOT COOL
And, quite frankly, well ... I'm tired of it.

Jack is my son, who just happens to have an extra chromosome
He will continue to grow and learn, and he will be a contibuting member of society. 
He will be respectful, and he will ALWAYS be your friend.
So, please ... be his friend.  And show him and others like him the RESPECT they deserve. 

The NEW R-word = RESPECT

{Exit soapbox.}