The Down Syndrome Creed

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

Save the Date!

The Annual Madison Area Down Syndrome Society's Step UP for Down Syndrome Walk is scheduled this year for Saturday October, 23rd. This year there is both indoor and outdoor space reserved in the event of inclement weather. Last year it was freezing and we actually had flurries! We are inviting all our friends and family to come walk with us, so save the date and stay tuned for more information :)

Oprah

Me and my fellow parents of children with Down syndrome are writing the producers of the Oprah Show in order to encourage them to create a show devoted to Down syndrome. A few parents have written in the past and not heard a response. Now we are banding together to make this happen.

Here is the letter I sent...

Dear Oprah Show,

My fellow parents of children with Down syndrome and I are banding together to educate the public about Down syndrome. We would love if you would help us in this effort by devoting a show to our cause. Did you know the abortion rate for babies diagnosed with Down syndrome prenatally is a staggering 97%?!?!?! It makes me physically sick to think about this statistic. You see my first baby was stillborn at only 28 weeks gestation. I later found out it was due to an underlying blood clotting disorder, I wasn't aware I had. When I got pregnant again 8 months later, I was overjoyed. At my 19 week ultrasound I found out my daughter had a heart defect (AVSD). It is very common in babies with Down syndrome. We were told our baby had a 60 - 70% chance that our baby had the genetic condition. The only way to know for sure was to have additional invasive testing. My husband and I immediately declined the testing. If she had Down syndrome that was fine with us, she was our baby. Meanwhile, we decided to educate ourselves about Down syndrome in the event our daughter had this condition. We learned a lot, and when our daughter Caydence was born in June of 2009 and we found out she did have Down syndrome, we were prepared. It seriously didn't phase us; after losing our first daughter, we realize how precious life is and we were just so happy to have her with us. Sadly, many women who find out their child has Down syndrome are devastated and often go through a mourning period. The social stigma of Down syndrome is deeply rooted in our society. Now, as parent of a child with Down syndrome, I want to devote my life to changing this social stigma.

If you would like to help us in our effort, please submit your letter at: Oprah Show Submission Site

Sum Sum Summertime!

Well, Caydence had her huge birthday bash last month. We had LOTS of friends and family come to help celebrate. Here are some pics from her big day...

She did pretty well with her cake. She got a couple tastes in. I am purposely omitting the pictures where she got a little too much cake in her mouth and starting crying/screaming. Luckily she quickly recovered once we sung her favorite song "If you're happy and you know it" :)

Caydence has been doing very well as of late. Her newest trick is sitting unassisted and she is getting better at it every day. The main thing she is lacking is the ability to hold herself up with her arms. I try to work with her, but she just doesn't like putting weight on her arms.

We took Caydence to the big 4th of July Parade a couple weeks ago. She had a really good time before the parade started, but she wasn't a big fan of the honking trucks, fire engines, and marching bands. So we ended up leaving after only a half hour. Maybe next year :)

Right now we're waiting for her hip helpers to come in the mail. They are spandex shorts with the legs sewn together. Caydence often sits with her legs wide apart and bent like a frog. The hip helpers will help her bring her legs together and kind of straighten out, which will help with crawling, standing, and eventually walking. Her OT made her a pair of legs bands out of a piece of elastic, but Caydence likes to take them off. The hip helpers definitely won't be as easy to remove. I'll be sure to post a pic of Caydence in her nifty shorts as soon as they arrive :)

Last week Caydence developed a blister under/next to her button (feeding port). This weekend it kind of deflated and last night it was bleeding a little. So this afternoon we're going to the GI doctor to have it looked at. We're thinking that she is just out growing this button, so she needs a bigger one. We'll see. I'll keep you posted :)