Look what I can do

Having down syndrome doesn't stop us from having fun and reaching our goals!  

It might take us a little longer, but we are enjoying the journey!

Happy Down Syndrome Awareness month!

What is so "down" about down syndrome?

If you have been following our family you know we think there is absolutely nothing "down" about down syndrome. 

So what is up with the name?     Seriously couldn't they have called it... Cool syndrome?  Rock Star syndrome,  Or maybe we are more alike than different syndrome?

Dariya really wanted to know where the name down syndrome came from so we did some research.

John Langdon Down was born in Cornwall England in 1828.  At 25 he entered medical school, and after graduation he became an early advocate for humane treatment and therapy for the mentally handicapped.

He served as medical superintendent at the Royal Earlswood Asylum in Surrey, England, where he wrote the first paper identifying common traits among patients afflicted with what came to be called "Mongoloidism".

Dariya signs "more"

In 1958, French geneticist , Jérôme Lejeune discovered that Down syndrome was caused by an extra chromosome on the 21st pair. The French Academy of Sciences published his scientific work on January 26, 1959. For the first time in world history, his discovery established a link between an intellectual disability and a chromosomal abnormality.

In 1961 the editor of the British medical journal The Lancet proposed that the condition be renamed Down's Syndrome.  In 1965 the World Health Organization redesignated the name to Down Syndrome.


After studying all the research materials Dariya wanted to let you know that we aren't "down" because we have 3, 21st chromosomes, we are just extra cute! 

Don't forget about the Fristoe's iPad2 & iPod touch giveaway it ends this SATURDAY October 8th at midnight and they are still needing over $16,000 to bring Clare home.  Please, please, please go over and donate $10 and beg your friends to do the same.

It really is ok!

Three years ago Jason knew absolutely nothing about down syndrome.  What little information I had about it was outdated from my bachelors degree in special education.

All that changed on October 9, 2008 when Alayna entered our lives.  We were forever changed at her delivery.  Not in a negative way as most people would think.   Don't get me wrong it took Jason several days to get over the shock of her diagnosis and to stop worrying about her future.

Our lives are blessed. 

Our lives are so much fuller, so much brighter and so much more connected to God and each other than they ever would have been if Alayna had been born without an extra chromosome. 

That little extra bit of genetic material is only one part of who Alayna is, it in no way defines her.  She is beautiful, loving, silly, smart, playful, bubbly, stubborn, feisty, cuddly, empathetic and the list could go on and on.

But, you see if God hadn't blessed us with this sweet girl....
 
Our eyes would NEVER have been open to searching Reece's Rainbow and God leading us to adopt this sweet, beautiful angel.

You see blessings sometimes come in small, unexpected packages.  Alayna only weighed 4 pounds 13 ½ oz.  But, the impact she has had and continues to have on our lives is enormous. 

October is Down Syndrome Awareness month.   It is also Alayna's birthday month.  We will celebrate next week with cake and ice cream and family just like almost every other family does for their child's birthday.  See here at our house, our girls aren't any different than Aidan who only has 46 chromosomes.

I am not a great blogger, or even a very frequent blogger these days (can't imagine why).  Some of our bloggy friends (on our blog roll) will be blogging daily about ds.  Hope you pop in and learn great stuff this month as I will.

Hopefully through our daily lives we have shown and continue to show the world that life with an extra chromosome is really ok.

Down Syndrome awareness

As October is Down Syndrome awareness month, I thought I would share some information with you that might help you or someone you know better understand down syndrome.

For us, down syndrome is just one small part of who Alayna is, it in no way defines her. She is a typical almost 2 year old girl that loves her big brother, giggles lots, is very social, enjoys books, loves music, loves ice cream, gets excited when we say we are going to the park, gives great hugs and kisses...the list could go on and on. As you can see she is more alike every other kid than different and that is what we focus on.

Some of our blogging buddies are blogging daily this month to bring awareness to ds. As it takes me WAY too long complete just one post I am not going to take on this great challenge but, look forward to reading all the great posts from our friends. Take a moment to visit our buddies blogs this month and learn a little more about the Ups of down syndrome.

Did you know...

Down syndrome is the most commonly occurring genetic condition with an incidence of 1 in every 733 births. Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome.

There are currently over 400,000 individuals living with Down syndrome in the United States.

There are approximately 5,000 babies born with Down syndrome each year in the United States.

It is one of the leading clinical causes of cognitive delay in the world - it is not related to race, nationality, religion or socio-economic status.

With appropriate support, individuals with Down syndrome can lead fulfilling lives and be contributing members of society.

Thanks for loving our Alayna and all our other buddies around the world that sport that extra chromosome!

A chance meeting?

You probably know that I don't think anything happens by chance. I believe God has a specific purpose for each of us on this Earth and although some days I have no idea what he is calling me to do (probably because I don't get quiet enough to listen) some days it is made completely clear.

Alayna & I took a trip to one of our great local parks this week and immediately were welcomed by another mom and her son.

This mom was very friendly and completely taken with Alayna. She watched Alayna, wanted to know if we knew prenatally about the ds, commented on her, was intrigued by her sign language and continued to ask questions about her.

After about 15 minutes I was starting to wonder where the conversation was going to lead.

This mom was pregnant with baby number 2 and explained to me that they had been pregnant after their son and miscarried a baby that they found out had down syndrome. She confided in me that she didn't really know much about ds and was praying for a healthy baby this time.

All the questions, the loving way she looked at Alayna, the inquisitiveness of her wanting to know all about Alayna and down syndrome was explained in that moment.

I was thankful that I didn't assume that this woman meant harm in her intrusion of our park date and afterwards was so very thankful that God put us at this park to enable us to further down syndrome awareness by answering this woman's questions.

I hope after meeting Alayna that any negative stereotypes about ds that she had were erased. I pray that if the baby she is carrying does have an extra chromosome that she will remember Alayna and all the information about ds that I gave her and that she will be a little more prepared to meet this blessing.

October...

As October is Down Syndrome Awareness month I thought I would share a sweet little story.



For those who don't know, my parents RV full time and winter in Brownsville, Texas. This year of course, we are not only celebrating 1 wonderful year with Alayna during October (stay tuned next week) but, we are also celebrating the 400,000 individuals with down syndrome at our local Step Up for Down Syndrome (formerly named the Buddy Walk). (There is still time to join!)




My parents jumped on our team as fundraisers and contacted family, friends and RVers to join us too. One couple in Brownsville, who has never met Alayna or for that matter they don't even know anyone else with down syndrome, has taken a leap in spreading down syndrome awareness. They donated to our team here is KC AND as they can't be here to walk with us they have signed up to walk in the Buddy Walk in Texas to further celebrate individuals with down syndrome.




Hallelujah for the blessing of Alayna, the cute little ambassador that she is. She has touched so many lives, even those she has never or maybe will never meet. For these moments we are truly touched and thankful.



Another great God moment for us this week was that the Bible study through BSF International that I have gone to for 4 years on Wednesday mornings has a GREAT kids program for 2 year olds to 18 year olds (Aidan, Grace & Rayne have gone with me and LOVED it), now added a program for 6 month olds up to 2 year olds, so Alayna will be joining me on Wednesday mornings starting in January and next October she will start in the preschool program. YEAH GOD!