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Saturday, May 9, 2009

CDLS AWARENESS DAY!!!

Today marks the day of Cornelia de Lange Syndrome's 20th Anniversary for CDLS Awareness. If you are not familiar with the syndrome, please visit the link above. Each year, thousands of children are born with this rare syndrome but are not diagnosed due to the lack of education of the syndrome. As you can see on the site, all the children have similar physical features. Turned up little noses, thick hair and arched eyebrows, small in stature, are just to name a few of the traits. Along with physical abnormalities, medical conditions are all too common. Acid reflux, severe intestinal problems, heart defects, and cleft and raised palets just to name a few. The key to getting these children to their full abilities and functions is early intervention. Without early diagnosis, early intervention is not a possiblity. Therapies such as phisical, occupational, speech, and developmental can make all the difference in these children.
Almost excactly one year ago, my son Mason was born with CDLS. We were shocked, devastated, and confused. We were so lucky to have Mason diagnosed the day he was born...by a fluke actually. The neonatoloist saw a child with the syndrome in his days as a resident...that was 30 years prior!!! My husband went to the net and found the Foundation for CDLS right away and started educating himself. I was not ready for that yet....I needed to bond with my baby first. First and foremost, he was my baby and he was just beautiful to me. The first couple days were so painful. I don't know why, but I pretended I knew the full extent of the syndrome....when people would tell me a few tidbits here and there, I would just go in the bathroom and cry. It was hard coming to terms that my child is not going to grow up like everyone else....but that is okay. He has brought so much joy into this world, to me, my husband, and our oldest son, Reece. He has a smile that goes on forever and touches everyone he meets.

When I got home from the hospital....unfortunatly without Mason, I was a wreck. I didn't know what the future held for Mason...for us. That was so incredibly scary. Scott showed me a blog he found about another CDLS boy. His name too is Mason! I was just in awe of this little angel. He was so beautiful and he was always happy and smiling. His mom Misty, was kind enough to talk with my husband and email us with support, comfort, and advice. I have a special place in my heart for Misty's Mason.....I knew as soon as I read his story and saw his happiness, that Mason was going to be happy...and that is all that mattered to me. Thank you Misty and Mason!!! Your comfort has meant so much to our family as well as the help from our families and friends!! The CDLS families and community have been fabulous as well. I have gotten to talk to some incredible moms!!!

So please, visit www.cdlsusa.org to educate yourself. Please post a link today and share this with others!

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10


35 comments:

heidi @ ggip said...

Thank you for sharing your story. It is very comforting to see the blogs of other kids with CdLS to me too. And you are the same as me, I know that a happy life is ahead and that happiness is what matters more to me.

ReeRee said...

My life has been so much happier since Mason was born. He is such a joy, and one of the most beautiful babies in the world. I love being his auntie. I love smooching him. I love when he giggles. I love how he is so nosey! He is truly an angel baby from heaven.
Thanks for sharing him with me.
AND..I expect him to sleep over soon!

Misty said...

aawwee!!!!!!!!!!! you make me cry!!!!!!!! thank you so much for your words!

your little mason is so very special to me too. i knew that he would be when scott descibed him to me and of course my heart melted when i saw the first pictures of him! you are an incredible mommy! and BOTH of your litte men are so adorable!!!!!! again, thank you for the words! mason and mason AND MEGAN AND MISTY = FRIENDS FOR LIFE LOL!!!!!!!!!!!!!!!!! ;)xxx

Rachelle said...

That is a beautiful story. Thanks so much for sharing. I am so grateful for our CdLS blogging community ~ all of you are such a big part of our lives. Great awareness post!

AddisonBrown1 said...

Your words, like many others I have read, make my cry. Our stories are all so similar that it helps me find hope when I think there is none. Our children are given to us for a reason and they are all so beautiful! Thank you for sharing!

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