31 for 21: Day 6 {Let's Educate}

On October 8, 2008, President Bush signed the Kennedy-Brownback bill ... otherwise known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Essentially, the act provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services.

This is something that is now imperative, since there has been a recent push for all pregnant women (versus just older women) to do early screening for Down syndrome ... typically around 12 weeks of pregnancy. Blood work and an ultrasound are involved in telling them whether or not their baby may have Down syndrome.

This is all fine and dandy ... however, women who learn that they are at high risk are often not given accurate and up-to-date information about Down syndrome. Thus causing them to terminate their pregnancy, sometimes after being pushed to do so by their OBGYN.

And that makes me want to throw up.

Because at the end of the day, these women are terminating their pregnancies without being properly educated. And in the end, that means that the Down syndrome population is slowly dwindling.

So what does that mean for my girls? Again, it makes me want to throw up.

Many people may not understand my stance on this, but really ... does it really look like my girls have such a horrible life, that they deserve to not be here?

I'm done. I don't even want to talk about it anymore.

Although, I will soon be talking about it a lot since my friend, Linda, and I are spearheading the Changing Lives Program here in Northern Virginia since it has yet to really been taken off the ground. I honestly cannot wait to get out there and talk with OBGYNs, give them accurate info and maybe even bring along my daughters so the doctors can have them permanently etched in their mind.

Things are so different today for people with Down syndrome, so different than even 10 years ago, let alone 30 years ago. Most people have such a negative connotation of what people with Down syndrome are like, what they will be like. Times are changing folks and I will admit that I am not someone who is cheering for the Down syndrome population to be eliminated on earth.

Wouldn't you feel that way if you were in my shoes?

31 for 21: Day 2 {The Creed}

After Payton was born, I found The Creed for Babies with Down Syndrome somewhere online. It has always been a favorite of mine ... and I like to read it every now and again. More importantly, I like to share it every now and again. I love the message it sends and I only hope that others take it to heart and share that message with their children.

Now that my girls are getting older, their differences stand out a lot more to others ... especially kids and their peers. And that, for me, is the hardest part. I have to deal with kids asking me, "Why doesn't she talk?" I have to deal with kids staring at my girls because they look different or act different. You get the picture.

While I am a pretty strong person and I can handle these things pretty well, I have to admit that sometimes it breaks my heart. It breaks my heart that my girls are seen as being different. It breaks my heart that they might not ever be fully accepted by their typical peers. And it especially breaks my heart knowing that right now, my girls don't know the difference. They don't know that they are already being judged by other kids ... and society as a whole, really.

That ... my friends ... that breaks my heart.

So please, read this creed and if you feel led, sit your kids down and explain differences to them. Put yourself in my shoes and please help me spread awareness and acceptance. I'd do it for you!

The Creed of Babies with Down Syndrome
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

31 for 21: Day 1 {Welcome to Holland}

October is National Down Syndrome Awareness Month. Each year, Tricia over at Unringing the Bell hosts the Get It Down: 31 for 21 challenge. I am not usually very successful at sticking to this, but alas ... I will try again this year.

The rules: It's simple. Commit to post on your blog at least once a day for the 31 days of October ... which is DS awareness month. You can write about DS, or not ... you can have a family member or friend with DS, or not. Just choose to do it and do it. Raise awareness of Down syndrome by taking part. It's that simple.

Ahem.

Almost four years ago, I was thrown into a new world. A new world where I didn't know anyone and didn't know anything.

That new world was the world of Down syndrome. It took me a minute, but I came to realize that there is absolutely no other world I'd rather live in.

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Raising Awareness {Buddy Walk style}

As you may have heard, this month is Down syndrome awareness month. In honor of that, approximately 270 cities across the nation host a Buddy Walk, a huge advocacy event for individuals with Down syndrome.

Our local Buddy Walk is this coming Saturday. We are participating in the walk, although we have not done much fund raising since we have been working so hard to fund raise for our adoption of Ms. Addison.

This will be our last year as Payton's Posse ... next year we need to incorporate Addison into our team name. Any suggestions? My favorite so far is The Balsis Brigade ... thanks Shay! :)

If you care to check out our team page or if you would like more information about the walk, click here. We'd love to have you join us if you are able ... there is lots of fun stuff for the kids!

Down syndrome {the facts}

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal abnormality. One in every 800 to 1,000 babies is born with Down syndrome.
• There are more than 350,000 people living with Down syndrome in the United States.
• Down syndrome affects people of all ages, races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 56 today.
• 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.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
• People with Down syndrome attend school, find work, participate in decisions that affect them, and contribute to society.
• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future

The Creed of Babies with Down Syndrome

My face may be different

But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

October is Down syndrome awareness month!

Unringing the Bell is hosting the 2nd annual 31 for 21 blog challenge ... and I'm playing! Here are the rules ...

When do I do it?

The goal is to blog everyday for the month of October. 31 days to raise awareness of Down syndrome (a.k.a. Trisomy 21). Get it? 31 for 21!

What do I write about?
Anything your heart desires. I don't like to put restrictions on ya'll. I just like to read what you have to say. Last year people made up “challenges” and gave out ideas for topics. I thought that was a lot of fun! Pictures are good too!