Wow!! You guys asked such great questions. I’ll start with a few, then finish up next week.
1. Which of David’s acheivments has been most surprising?
I think I have been most suprised to see his personality and to see him communicate. Each acheivement is a celebration, but in general, I just didn’t expect to “know” him so through and through.
2. What is David’s life expectancy?
People with CdLS usually live into late adulthood. It is not a degenerative disease, but there can be complications as a result of the syndrome. We hope David will live a long, full life.
3. What is most difficult about having a son with a disability?
Probably my pride. I kinda thought I had my life planned out and that I somehow deserved a pain-free existence. I’ve really had to let go of wanting that perfect “image”. When you have a kiddo with two fingers, there is no hiding the reality that life is painful and we are imperfect people. I have also felt really freed from trying to put forth some false reality that I think other people want to see. Pride is an ongoing struggle–for all of us, I think!
4. What is the greatest blessing?
Honestly, there are SO MANY blessings it is hard to name one. But I would have to say the pure JOY that David has brought to our lives. He is precious and approaches the world with a silly, carefree attitude. I love that.
5. What broke your heart when you realized David wouldn’t be healthy?
I cried and cried when they told me David would probably never speak. I couldn’t image my child never saying “I love you, mommy”. Truth is though, he tells me that he loves me all the time when he smiles when I walk into a room or when he nuzzles his head into my neck. I have no doubt that he loves me and that he knows how loved he is!!