He came out quietly. There were whispers from the doctors. There was a terrifying tension that filled the room.
After the doctors did a quick evaluation, Steve, my husband brought David over to me and laid this tiny, swaddled baby on my chest. He was adorable. He had a full head of hair, blue eyes and a button nose.
He also had only two fingers on his left hand, a severe heart defect and we would soon find out, a genetic disorder that would make life look very different for our new baby.
I’m sharing over at {in}courage today! Hop over to read the rest of the post.
Hi Lisa, I accidentally ran across your blog and I cannot stop reading. Your David is so special and feels close to my heart because I have two grandsons that have special needs. They have Fragile X syndrome. Their ages are 22 and 31. Neither of them will ever be able to live on their own. I have learned so much love and compassion from them. I know God has a special place in Heaven for them. Their Mom (my daughter) teaches the first grade….(her name is Lisa) ? Lucas, the youngest grandson is in a program called Project Search, to find out what he is capable of doing and then to find him a job. The other one is RYAN. He is 31 and lives with me. He was born at 28 weeks and weighed 1 lb and 8 oz. He still is tiny and so full of love and joy. They both are my heart! I am going to follow your blog. Your poem about worry was so good and sounded just like me! May God continue to walk with you on your path of like!
My family fostered a sweet baby girl who was later diagnosed with CDLS. She was born full-term weighing 3lb 10 oz. Before she received her diagnosis, when she just wasn’t gaining weight and battled many medical issues, her pediatrician told us we needed be prepared that she might not be long for this world. She is almost 7 now and, despite many challenges along the way, she is a miracle and a joy to her adoptive family and to us as well!
I tried to find the article over on (in)courage, but couldn’t. Do you have a direct link?
I just read several of your beautiful posts. We just adopted a sweet little 9- year -old boy from China with CDLS… The journey is just beginning for us. It was really a Godsend for me to stumble across your blog and see the pictures of your son as I knew immediately he has CDLS like our little guy. Thanks for sharing so beautifully.
So now we’re family–at least CdLS family. Hello to you! Sending you love.
Hi Lisa, Im from Norway and have a son that looks like David. I would love to send you an email. All my love Vanja
Hi Vanja
You can email me at [email protected]
xo
I ran across your post and immediately saw your adorable son! I am a special education teacher and one of my all time favorite students ever had CDLS. The second I saw the picture with you and your son my heart melted. I absolutely LOVE your story…and your sweet little boy. Warms my heart to see such love. xoxo
Hello Lisa. I was wondering what kind of syndrome David has, if u don’t mind me asking? My daughter has Cornelia de Lange syndrome.
Hi Michelle
Yes! He has Cdls! xx
Hi Lisa,
David is adorable!! I am aSpeech Pathologist who recently got a student with CDLS. What advice can you share with me about the syndrome. I am working hard on developing a functional communication system with my student.
Thanks.
Suzanne
Beautiful boy and beautiful mom! You must be a very special person if God chose you to be the om of the special little one!
I’ve read David’s story a few times, so touching every time! He has a really great smile!
He is so gorgeous and has such a HANDSOME smile:)