RAISING JOEY

OK, so I missed a few days worth of posts, opps!!! Anyways, I love cute, funny saying bumper stickers, I actually have one on the back of my van that says, “My kid has more chromosomes than yours!”. A couple others I thought of that would be cute…..

“Genetically enhanced”

“Designer gene original”

“What’s an extra chromosome between friends?”

**What cute sayings can you think of for our kiddos who have Down syndrome???

I dunno about you guys, but this site has some REALLY cute shirts for kiddos who have Down syndrome!!!!

Fickle Zeal’s Online Shop!

Emily Perl Kingsley not only wrote the poem “Welcome to Holland” but also is an Emmy Award winning writer for Sesame Street. One of my absolute favorite things she wrote for Sesame Street is the song “Count Me In.”

How about a quick histoy lesson today??

Most people credit John Langdon Down for discovering the common traits associated with Down syndrome in 1866 he wrote a paper entitled “Observations on the Ethnic Classification of Idiots” in which he wrote the theory that it was possible to classify different types of conditions by ethnic characteristics including what he called Mongolism which (thankfully) now is known as Down syndrome.

Dr. Jérôme Lejeune is actually the one who discovered the extra 21st chromosome that truely makes Down syndrome, otherwise known as Trisomy 21 in 1959.

Dr. Lejeune found the 21st chromosome by taking a skin sample from a patient who had Down syndrome and looking at the chromosomes and saw the extra 21st. He spent the rest of his career (and life) researching Trisomy 21 and specializing in the treatment of individuals who have Down syndrome.

If you’re in Boston today and are able to, go support Karen Gaffney as she swims across Boston Harbor today to raise money for the CDSC’s neighbor, the Massachusetts Down Syndrome Congress!

Support Karen Gaffney’s Boston Harbor
8 Mile Swim for Down Syndrome

Our Vision: The MDSC wants to be recognized by parents, educators, people with Down syndrome, and the medical community as the preeminent organization in Massachusetts for information, networking, and advocacy for and about Down syndrome.

What do all of these people have in common?

Charles Darwin (naturalist)
Albert Pujols (St. Louis Cardinals first baseman)
Cathy McMorris Rodgers (Washington Congresswoman)
John C. McGinley (actor)
Eva Longoria (actress)
Gene Stallings (Arizona Cardinals headcoach)
George Will (journalist)
Arthur Miller (American playwright)
Jamie Foxx (actor)
Jim O’Brien (Indiana Pacers coach)
Emily Perl Kingsley (Sesame Street writer & author of Welcome to Holland)
Heath Bell (San Diego Padres closing pitcher)
Charles de Gaulle (French military leader)
Roy Rogers & Dale Evans (actor & actress)
David Ragan (NASCAR driver #6)
Sarah Palin (Alaska’s governor)
Julie Newmar (Actress- original Catwoman)
Lowell Weicker (the former Govenor of Connecticut)
Rex Hudler (retired baseball player & Angels Baseball announcer)
Damon Hill (Formula One Racecar Driver-1996 Champion)

Click here to find out!

Jennifer Graf Groneburg’s book, Roadmap to Holland is a must read for any mother of a child who has Down syndrome. Her true words and raw feelings about when her son was born help to make any mother know she is not alone and she is not the only one with feelings like her own.

Another must read!!

It was 4 years ago today that I recieved that call from my obstrician telling me that the prenatal testing I had done the previous week came back positive for Down syndrome. That phone call changed my life forever. That day, I started my journey into Holland.

It was a trip I never imagined I would ever take.

It’s a journey that has had so many twists and turns. Good times, bad times. Happy times, sad times. Scary times, extremely fun times.

While I was pregnant with him, there was a time we weren’t sure if he would even make it. He had a cystic hygroma on his neck and many babies who have those are stillborn.

Also, while pregnant with him, for several months, we weren’t sure if he would be like 70% of other babies who have Down syndrome and have a heart defect. Thankfully, the day before Thanksgiving in 2006, we found out his heart was just fine.

Then by the grace of God, the cystic hygroma dissolved and he was born perfectly healthy!

Joining the CDSC and attending our first convention while I was still pregnant with Joey was like walking into high school on the first day of my freshman year. So scared and nervous but the day ended up being wonderful and I made so many new friends. Now, I have lifelong friends thanks to the CDSC!

Then finally on March 14, 2006, Joey was born weighing in at a whopping 5 lbs, 9 oz. He was so beautiful, I didn’t see an extra chromosome, I saw a handsome little boy with almond shaped eyes and cute, crooked little pinky fingers.

Each milestone has been a triumph. When he was able to finally hold up his head, we cheered. When he finally was able to sit up on his own, we rejoiced. When he took his first steps, it was like he had just won the Super Bowl!

And boy oh boy, wearing that darn helmet for those 16 weeks was an adventure of it’s own! Poor little guy had to wear that helmet for 23 hours a day!

Then November 2007, when Joey had to have intestinal surgery to repair a malrotated intestine, that was definetly a test of my own personal strength. I grew a few more gray hairs that week he was in the hospital!

Having a child with any special need, no matter what the diagnosis is, changes a parent in so many ways. It can be very stressful and have its ups and downs, but for me, it changed me for the better. Joey helped to make me the person I am today. Before I had Joey, I was heading down the wrong path and was becoming a person I didn’t like. Thanks to him, I boarded the plane to Holland and I’ve never looked back. It has been the journey of a lifetime!

I love you Joey!!

~My story about recieving Joey’s prenatal diagnosis.

~If you’re not sure what I’m talking about when I talk about taking my trip to Holland please read Welcome to Holland, by Emily Perl Kingsley

Unfortunatly for me, 4 years ago, I was a frequent user of the “R” word. I never gave one thought to how much it could really hurt someone emotionally who has a loved one who has Down syndrome or any other disability. Once I had Joey, I said it once and my own words, hurt myself. Tears welled up in my eyes when I realized that my own words were used often by others (and myself) in a negative way.

Some people don’t even realize when they say it or think nothing of it.

The use of my words has changed dramatically since Joey was born. I used to also say, “That’s so gay!” and now I no longer say that either. So many people think they’re being politically correct with their language and they’re not.

To me, the use of the word ret@rd is just as bad as saying the “N” word. It hurts just the same to me as the “N” word hurts to African Americans.

Please check out the websites listed below about the use of the “R” Word and “People First Language.” Words matter, please use them correctly.

The “R” Word Campaign

Also, be sure to check out Kathy Snow’s website on People First Language!

Looking for a new book to read?? How about Gifts 2?

Throughout the month I’m going to post various books on Down syndrome. One of the best publishers who have books on disabilities is Woodbine House, stop by and check them out!
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Acceptance, courage, friendship, awareness, and joy–these are the gifts recounted in more than seventy inspirational essays included in Gifts 2. Edited by Kathryn Lynard Soper, the follow-up to the bestselling Gifts presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Learn more about both Gifts books…visit the editor’s site!

Almost 3 1/2 years ago when we found out prenatally that Joey was going to have Down syndrome, I never imagined in my wildest dreams that I would have made the friends that I have who also have children who have Down syndrome. It’s truely amazing how one little chromosome has brought so many of us together.

Some of us bond via Facebook or MySpace, some through Blogging and others through their local Down syndrome organization like the Connecticut Down Syndrome Congress. I have found friends in all of these including my best friend, Melissa!

I also never imagined that I would have gotten as involved with the CDSC like I have. I started out by joining the Buddy Walk Committee, from there I joined the CDSC’s Board of Directors, then from there I started The Holland Committee, which is the CDSC’s New and Expectant Parent Outreach and Support Committee.

After I got The Holland Committee up and running I signed up to take a 6 week Parent Leadership and Advocacy Class. While taking the class, I never imagined what my next step would be. Next Wednesday, October 7 is the CDSC’s Annual Membership Meeting where, myself and fellow classmate/ parent, P.S. are to be voted in by the members & to become the CDSC’s Co-Presidents and work together for the next 2 years!

It’s simply amazing how one simple chromosome can enrich and enhance one’s life in so many ways… amazing friends and amazing opportunities for the rest of my life!

A day late and a dollar short, HAPPY DOWN SYNDROME AWARENESS MONTH! I’m going to do my best to post once a day to celebrate this very important month that helps to celebrate and raise awareness about individuals like Joey who also has Down syndrome. I’m going to brainstorm my actual post for today so come back soon and see what I’ve written about!