Will's Way, Life with Cornelia deLange Syndrome » Cornelia deLange Syndrome http://bethsmiz.wordpress.com A site to share information about Cornelia deLange Syndrome Sat, 05 Jan 2008 13:30:27 +0000 http://wordpress.org/?v=MU en Sweet Sixteen http://bethsmiz.wordpress.com/2007/10/23/sweet-sixteen/ http://bethsmiz.wordpress.com/2007/10/23/sweet-sixteen/#comments Tue, 23 Oct 2007 14:06:32 +0000 bethsmiz http://bethsmiz.wordpress.com/2007/10/23/sweet-sixteen/

happybirthdaytoyou22.jpgYour 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.

]]> http://bethsmiz.wordpress.com/2007/10/23/sweet-sixteen/feed/ bethsmiz happybirthdaytoyou22.jpg TeamCdLS to Run the Chicago Marathon, Oct. 22, 2006 http://bethsmiz.wordpress.com/2006/10/10/teamcdls-to-run-the-chicago-marathon-oct-22-2006/ http://bethsmiz.wordpress.com/2006/10/10/teamcdls-to-run-the-chicago-marathon-oct-22-2006/#comments Tue, 10 Oct 2006 09:33:13 +0000 bethsmiz http://bethsmiz.wordpress.com/2006/10/10/teamcdls-to-run-the-chicago-marathon-oct-22-2006/

TeamCdLS 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:

http://www.cdlsusa.org/teamcdls/index.shtml

]]> http://bethsmiz.wordpress.com/2006/10/10/teamcdls-to-run-the-chicago-marathon-oct-22-2006/feed/ bethsmiz In the news… http://bethsmiz.wordpress.com/2006/10/10/in-the-news/ http://bethsmiz.wordpress.com/2006/10/10/in-the-news/#comments Tue, 10 Oct 2006 09:27:56 +0000 bethsmiz http://bethsmiz.wordpress.com/2006/10/10/in-the-news/

http://www.timesunion.com/AspStories/story.asp?storyID=520193&TextPage=1

]]> http://bethsmiz.wordpress.com/2006/10/10/in-the-news/feed/ bethsmiz http://bethsmiz.wordpress.com/2006/10/10/8/ http://bethsmiz.wordpress.com/2006/10/10/8/#comments Tue, 10 Oct 2006 09:11:55 +0000 bethsmiz http://bethsmiz.wordpress.com/2006/10/10/8/

willfav.jpglife0926will1.jpg060926bethandwill_tn.jpg060926will1_tn.jpg

]]> http://bethsmiz.wordpress.com/2006/10/10/8/feed/ bethsmiz willfav.jpg life0926will1.jpg 060926bethandwill_tn.jpg 060926will1_tn.jpg 15 Years Later… http://bethsmiz.wordpress.com/2006/10/10/15-years-later/ http://bethsmiz.wordpress.com/2006/10/10/15-years-later/#comments Tue, 10 Oct 2006 08:59:30 +0000 bethsmiz http://bethsmiz.wordpress.com/2006/10/10/15-years-later/

I 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.

]]> http://bethsmiz.wordpress.com/2006/10/10/15-years-later/feed/ bethsmiz Hello world! http://bethsmiz.wordpress.com/2006/10/10/hello-world/ http://bethsmiz.wordpress.com/2006/10/10/hello-world/#comments Tue, 10 Oct 2006 08:48:05 +0000 bethsmiz

Will’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. 

]]> http://bethsmiz.wordpress.com/2006/10/10/hello-world/feed/ bethsmiz