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!!
I just found your blog and I love your honesty (and your awesome jewelry!) Your post about David was so touching. I think having a child with a disability gives you a very unique and wonderful perspective on life.
Thank you so much for this post. The last answer brought tears to my eyes. There is so much hope in the answers to these questions. This is proof that God will carry us through this broken world.
I don’t think anyone would wish that their child would have any kind of syndrome, but the possibility is so much less frightening after knowing David and seeing his beauty.
I really liked your comment on pride too, that’s something I’ve been thinking about a lot lately. Yucky!
Beautiful answers, full of hope and joy. I am glad to have met you and your family in the blogosphere. Thank you for sharing your story.
I love you Lisa!
I love this post, especially your answer to #5. Kids faces say it all, don’t they! Thanks for sharing.
Great answers Lisa! Thanks for being so transparent!