We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.
Wednesday, September 17, 2008
The Big Blue Binky and Sleepless Nights.
Since Noah left the NICU at 5 weeks old he's had a binky. He used to have a little orange one that was too small for his face, so I bought him this big blue binky that you see in the pictures. I have grown to hate the binky. I know hate is a strong word but this binky is responsible for keeping me up at night. At least 5 or 6 times during the night Noah wakes up and cries for his binky. He won't go back to sleep until I find it and put it back in his mouth. This has been an ongoing saga for quite some time now. If he doesn't have his binky when he lays down for bed he will not fall asleep. How am I ever going to be free from "the big blue binky?" This is a question I ask myself when I get up in the morning and stumble to my coffee.