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.
Sunday, March 14, 2010
My blog is a lot like therapy for me sometimes. A place where I can go and be honest with myself and whoever is interested in reading. Most of the time I don't care how emotional I get or how raw my feelings can be. I am glad that I feel comfortable being "real" on my blog. Tonight I was doing a lot of thinking about how far I've come in the last three years. I looked at a picture of myself around the time after Noah's birth and couldn't see me. I couldn't see the person that I have become today. I thought of a particular day that stands out in my mind when Noah was in the NICU. My mom (who was at the hospital every day with me) was able to convince me to leave the hospital for a walk. I remember sitting on a bench looking out to the river and crying in my mom's arms. I remember exactly what I was thinking about in that moment. I told my mom that one of my fears was how Noah would be treated by others? Would he be made fun of in school? Would he have friends? My mom cried with me. She was in pain watching her daughter in so much pain. I remember that time because those fears seem so insignificant now. Three years later I see this beautiful little boy that will love the world even if sometimes it doesn't love back. I know that the friends he will keep will carry the same beauty inside of them. I'm not naive, I know there will be people that will be cruel, ignorant and hateful but I also know that Noah won't care about those people. So why should I? Even now Noah senses the people that don't have faith in him. He gravitates to people that believe he can do what he puts his mind to. Three years ago I was so scared. Three years later I am brave. Three years later my life is fuller and my heart is warmer. I want to thank my mom for the gift of compassion. Without her that piece of me might not exist.