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, May 26, 2010
This Part Is Getting Easier
When Noah was an infant, I dreaded anyone asking me questions about his diagnosis. I hated saying the words "Rubinstein Taybi Syndrome". I especially hated the syndrome part. It was so hard to answer when someone asked what it was. I never knew what to say. Sometimes I tried to make it sound like no big deal so people would stop asking questions. Today when I was waiting for Noah to come out of therapy, I realized how far I have come. (yes I'm going to give myself a pat on the back right now) I was talking to another mom about Noah. The words Rubinstein Taybi Syndrome didn't sting, they were just words. It was just a normal conversation explaining the different things Noah has to go through. It didn't bother me to explain to a perfect stranger that my son has a disability. It only bothered me a little when she asked "Is he going to talk." I swallowed kind of hard and just answered "I don't know but I'm giving him every opportunity there is to communicate." I was proud of myself this morning because I didn't hold back. I realized that the person I was a few years ago is gone. The person I am today has a lot more courage. I am grateful for that.