Tuesday, October 23, 2012

This is who you hurt...

This is who you hurt when you use the word retard.

I'm not going to write an open letter to Ann Coulter about how wrong she is for this.  She knows it's wrong to degrade a whole group of people, deem them worthless, and disregard them completely as she litters the Internet with hateful slurs; but she doesn't care.  Even if my tiny little blog did somehow reach her, it wouldn't matter. 

I don't have a very long reach.  My readers are mostly my friends, my family, neighbors, and acquaintances.  Good people who, unlike Anne Coulter, have a moral compass.  Yes, good people.  People who wouldn't intentionally cause harm to another.  People who certainly wouldn't throw stones at someone who was defenseless.  But you see, sometimes we don't realize that, even without intention, we can cause harm to another.  We can leave scars.  We can perpetuate an awful injustice that so badly needs to stop. 

I may have a few times during my years casually used the word "retarded."  "I can't believe I have to pay this much for new tires on my car; they're made of rubber, that's so retarded."  I wasn't aiming to hurt anyone.  I would never actually call someone a "retard", or use the word to diminish someone.  I am more sensitive to the word now that I am the mother of a child with Down syndrome, and I'm a better person thanks to that.  "Retard" is a word that hurts.  It's a word that generalizes a whole group of people.  It's a word that carries forward a stigma that limits people who have shown themselves to be capable of much more than had once been expected from them. 

Our society has come up with  nasty names to disgrace just about every "group" of people there is, whether it be race, sexual orientation, social economic status, etc... there's a slur to label you with.  Most of them, however, are not socially accepted.  They're considered to be discriminatory.  Why then, do we accept the word "retard" to be thrown around like it is?  Carelessly spoken between friends in line at the coffee shop, plastered on friends' Facebook walls, Tweeted, spewed all over television, the movie theatres, and radio?  Why do we allow this word in our vocabulary?  Why do we allow it in our homes?  In the schools that our impressionable children attend?

Please don't casually use the word "retard" as slang.  It should not be socially acceptable in any context other than it's medical use.  If it's casual use is no longer accepted, than surely, when an awful excuse for a human, like Anne Coulter uses the word in the manner she did, she'd undoubtedly be knocked right off her platform for her offensive behavior.  Do you think if she used the N-word, she'd get away with it?  No way!  That would be totally unacceptable, the network she works for would step in and shut down the offensive behavior.  The R-word is just as hateful, and should not be tolerated in a public forum.

Anne Coulter, here is the person you are trampling over.  The person who you have declared is less than you.  Here she is as she basks in the glory of a beautiful fall day, rolling joyfully in the grass.  She is an innocent child who deserves to grow up in a world that values her life, where she'll be treated with decency, and allowed to blossom to her full potential without the threat of someone like you carelessly stepping on her.

Sunday, October 14, 2012

Daily Life

I talk about Down syndrome a lot, well especially in October, I have good reason for that, being that it’s Down syndrome awareness month.  You might think that my life is consumed with Down syndrome, but please, don’t be mistaken.  My life is not consumed with Down syndrome.  My life is consumed with my love for my family (well, there's the never-ending laundry and dishes too, I often feel like they consume me.)  We spend our days doing “normal” family stuff.

Like grocery shopping…
And soccer practice…

And pumpkin carving…
Sure, there are more Dr. appointments, but we make it fun…
... and we make up for it with some relaxing cuddles and cartoons time…
We go to the park where Danielle likes to eat the grass…
...and swing on the swings...

We share story time before bed…

We even venture out to art museums…
…and amusement parks…

We travel to far away places (California)...

And we’re spontaneous sometimes (whether mom likes it, or not)...
They were NOT supposed to get wet!

Life isn’t perfect.  It wasn’t perfect before Danielle and it isn’t perfect after. She, however, IS perfect, and life IS good, really good.

Friday, October 12, 2012

What I wish I had known then...

When Danielle was born I immediately recognized her almond shaped eyes, the slight bend at the top of her ears, and the “sandal gap” between her toes. I realized right away she had Down syndrome. I was worried. I was scared. I was paralyzed. Some of my concerns were rational, and some weren’t.  The pediatrician could tell me all about hypotonia, congenital heart defects, and cognitive delays, but not a single word about what daily life would be like with Down syndrome.  That's what I really needed to know.  What will my life be like?  I wish I had known that it would be this good. No diagnosis could determine WHO she would be, or how she would add so much VALUE and JOY to our lives.  These are things that no doctor or prenatal test can predict:
  • Her cuddles will be heavenly.  She will trust you with the weight of her whole body, and with complete abandon she will drift to sleep in your arms.  As she exhales in to slumber it will feel like angels breath on your skin.  You will be completely and helplessly enveloped in the love you have for your child.

  • Her siblings will cherish her.  The sound of the giggles they will share will reach in to your soul.  It will heal wounds that have been there too long. 

  • She will strengthen your faith and your values.

  • She will be the easiest of your three children. 

  • She'll be joyful.  She'll be patient and forgiving.  She will adore her family.  She will be fill to the brim with so many things that are good. 
  • Daily life won’t change much.

  • She will be resilient.

  • She will be adorable.  Perfect strangers will stop to ogle over her.

  • She will teach you more about life than you could ever hope to teach her, or any of your children, for that matter.

  • Her entry in to your world will be a life changing experience, a gift that not everyone is lucky enough to have been given.  She'll strengthen your character and give you more purpose in your life.  She'll inspire you to be an advocate.  With this child, is an opportunity to rise to the occasion, but you won't have to reach for the stars, because they have been given to you in her.


Tuesday, October 2, 2012

Myth Buster

MYTH: Down Syndrome is a rare disorder.

FACT: Down syndrome is not rare. About 1 in every 700 babies is born with Down syndrome and over 6000 babies are born with Down syndrome in the US each year. Currently, it is estimated that there are over 350,000 individuals with Down syndrome in the United States.
We totally hit the jack pot!

MYTH: Most children with Down syndrome are born to older parents.

FACT: Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

I was 29.

MYTH: People with Down syndrome have severe cognitive delays.

FACT: All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 

MYTH: Children with Down syndrome must be placed in separate special education programs.

FACT: Most children with Down syndrome in the United States are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects. Each school system is required to provide the best learning environment possible for all special needs children.

I love this message from IDSC for Life.

MYTH: People with Down syndrome are always happy.
FACT: People with Down syndrome experience a full range of emotions such as sadness, anger and happiness, just like everyone else.

My girl IS pretty happy, though.  I tell her all the time that God filled her chock full of joy.

MYTH: Individuals with Down syndrome die young.

FACT: The average life expectancy of an individual with Down syndrome is now 50 years of age.

Life expectancy has continued to improve dramatically over the years and will continue to improve with medical science advances.

Myths and Facts taken directly from About.com

Monday, October 1, 2012

31 for 21

"Mommy, I want to take Danielle to school for show and tell.  I want to share her with everyone."- My oldest daughter. 

Me too, baby girl... me too.  I want to share her with the whole world.  I want to tell people that regardless of what they may or may not know about Down Syndrome, that she is an amazing gift.  I want to tell them that her life is valuable.  I want to tell them that she is capable.  I want to tell them that she makes me proud every day.  I want them to know that I have hopes and dreams for her and that I believe whole-heartedly in her potential.  Most of all, I want to tell people that Down Syndrome is not who she is.  She does not suffer from Down Syndrome.  She is not defined by Down Syndrome.  She's a daughter, a sister, a niece, a cousin, a grand daughter.  She is a sweet one year old girl.  She is an individual.  She has a blossoming personality that is all her own, and just like anyone else, she deserves to be loved.  She deserves to be respected as a member of our society.  She deserves to be recognized by her teachers as a student with potential.  

Today, October 1st, kicks off Down Syndrome Awareness month, and I'm participating in 31 for 21.  It's a blog challenge.  31 days of October, 3 copies of the 21st chromosome.  31 for 21.  Raising awareness.

Danielle was born in September last year.  I was pulling my head out from the mud just in time for Down Syndrome awareness month, Buddy Walk, and 31 for 21.  I was just learning about Down Syndrome, and lucky for me, the Internet was flooded with information about the genetic condition.  It wasn't anything like the outdated pamphlet that was given to me at the NICU though.  It was the best information available.  Straight from the real experts, the parents, siblings and friends of people with Down Syndrome.  I learned about people first language, debunked myths and stigmas that I had associated with Down Syndrome, and noted the real facts.  I related to more personal posts about things like faith, and was privileged to experience what daily life was like in a family with a child of Down Syndrome.  I believe this flood of information was pivotal for me in the embrace of my child's diagnosis.  I was inspired to be an advocate for my daughter and others who are rocking their 47 chromosomes.

I don't know if I'll be able to post every day, but I'll give it a try!  I would really like for my friends and family to follow my blog this month.  It's important to me.  Read the posts, please! 

Thank you all for the overwhelming support in our fundraising effort.  Please consider joining our Buddy Walk team, if you haven't already.
Have you seen Danielle's Down Syndrome Awareness video?  Here's the link in case you missed it in an earlier post. http://www.youtube.com/watch?v=FX522GlbFZc&feature=youtu.be