Posted by cdlsohio on October 16, 2006
Say Hello to Marci. She is 27 years old and has Cornelia de Lange Syndrome. She is as beautiful inside as she is out. That grin you see is a welcome site in our household. It always brings a smile to my face for sure. Marci stands a whopping 47 inches tall and weighs 58 pounds. She is a walking oxymoron. Fragile with the strength of an elephant she runs our household with the blind determination of an obsessive compulsive person who has the vision of a perfect world and is bound to make it happen. When she demands, we comply. It is just easier. We get the nod of approval and a grin is our reward. When she smiles our world is perfect. If only every day could be a perfect day.
Posted in CdLS | 1 Comment »
Posted by cdlsohio on October 15, 2006
Name of Child with CdLS whom you participate in this list on behalf: Marci
Books currently on my nightstand: Face by Dean Koontz, Mac OSX Tiger Addition
Favorite TV show(s): Criminal Minds, House, Monk and Charmed
What’s the car radio tuned to? Soft Rock
Last movie seen in a theater: The Wicker Man (I hated it)
Dream vacation: A month of sleeping in and eating what I want without consequences
Grew up in…. Rural Ohio
First job: Picking strawberries on a local farm for 10 cents a quart
Favorite Quote: There are no mistakes in Life, just lessons
One interesting thing about me you might not know: I live in such a remote area in Ohio that I have to use dial-up for my internet connection because nothing else is offered in my area
Posted in CdLS | 3 Comments »
Posted by cdlsohio on October 14, 2006
I guess the first thing I should do is introduce myself. I am Vicki. Mom to Marci. I live in a world of uncertainty like the majority of you. I drink too much coffee, get too little sleep, hit the floor running in the morning and gripe about my poor aching feet all of the time.
My uncertain world is filled with obsessive compulsive behavior, medical fragility, and a lot of love, laughter and tears in the form of my daughter Marci who has Cornelia de Lange Syndrome. You will get to know Marci as I share from time to time, but if you want to catch up and read about her early years you can visit her web site Growing Up With Marci and CdLS.
I will tell you about the rest of my family another time. We have plenty of time to get to know each other. I just wanted to establish a resting place for my thoughts. I believe I have found the perfect place. Not quite the shady tree on a hot day, but it is a nice place to sip my coffe and put my thoughts to bed.
Posted in CdLS | 4 Comments »
