Our Journey

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.

Tuesday, December 14, 2010

Proud Ma Ma

I started to cover Noah's walls in his bedroom with all his artwork from school. Every little piece I get makes me so happy. The wall above his bed is covered and soon most of his room will be covered. You should see the proud look on Noah's face when he looks up at his work. It's completely awesome. Here is a picture of some of his work. Notice his cute little thumb in the Santa hand print. By the way I'm loving his teacher and her creativity. She really in truly believes in her students and loves them like her own. We are so blessed to have found this school.







Sunday, December 5, 2010

My Own Special Christmas Tree.

Last night Tom and I decorated our Christmas Tree. But as I was hanging the ornaments, I realized the tree symbolized something more than the usual warm, fuzzy feelings. This is the first year we have put a tree up in our house in years. Every year we have gone to N.Y for Christmas and don't bother putting one up. I thought the last tree we had in our house was four years ago. It was the Christmas after Noah was born and diagnosed with RTS. He was fresh out of the NICU that year we had a tree. My mom was still in Florida helping me. I was still a mess and full of fear that controlled almost every thought. I remember her helping us pick a tree out and then decorating it. I did not decorate the tree that year. I watched in a state of numbness as my mom decorated it beautifully. I did not feel joy and I certainly wasn't in the Christmas spirit. My wounds were very fresh and I didn't know if I would ever feel that "Christmas Joy" again. Wow!!! Last night I realized with each ornament hung that it represented strength. Each ornament was just a little piece of me throughout the last four years. When we finished the tree I teared up. I wish four years ago I had known that the joy would return. And when it did it would be even more powerful than ever. Our Christmas tree symbolizes how far our family has come.