Sweet Sixteen
October 23, 2007 at 6:06 pm | In Cornelia deLange Syndrome | 4 Comments
Your sixteenth birthday has come and gone. I was prepared for a depression or sadness to hit…but it didn’t. You were so happy on the day of your family party…enjoying every bite of bread dip, each present and TWO versions of Happy Birthday to You!
So, you are not driving, you are not going out on dates, you aren’t studying for your psat’s, playing football, going to the Homecoming dance…but you are happy. Mostly. On a day to day basis you have simple pleasures to keep you happy; playing the piano, being pushed on the swing, orbiting through the house, going for a ride in the car. You are safe and within sight and I don’t have to worry about you getting hit by a car or getting your heart broken by a dumb girl. 
Medically you need a tune up. We’re trying to arrange a multi-specialist visit in Boston to take care of ears, teeth and esophagus. It’s proving to be challenging. In the meantime we’ll try to keep you as comfortable as we can.
TeamCdLS to Run the Chicago Marathon, Oct. 22, 2006
October 10, 2006 at 9:33 am | In Cornelia deLange Syndrome | 7 CommentsTeamCdLS will once again run the Chicago Marathon to raise awareness of Cornelia deLange Syndrome and raise money to support the Cornelia deLange Syndrome Foundation. This year I am captain of our largest team of runners yet…15! We’re two weeks away!
If you’d like to help our cause click here:
15 Years Later…
October 10, 2006 at 8:59 am | In Cornelia deLange Syndrome, Uncategorized | Leave a CommentI wish there had been “blogs” when you were first born. There’s been so much information to record, which I never did. Now it’s a jumble of hazy memories with lots of unsure dates. I thought I’d remember all of your “firsts”, your hospitalization dates, your surgeries and illnesses. So we’ll start now which will help me keep things straight and maybe along the way we’ll help someone else who is starting their journey with CdLS.
Hello world!
October 10, 2006 at 8:48 am | In Cornelia deLange Syndrome, Uncategorized | 1 CommentWill’s Way…a way for me to keep track of happenings in Will’s life. A way for us to reach out to others who are searching for information about Cornelia deLange Syndrome. A way for me to keep in touch with my friends who are living life with Cornelia deLange Syndrome.
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