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.
Monday, August 24, 2009
Choose Hope Over Fear.
For me raising a child with special needs allows fear to creep into my thoughts on a regular basis. I feel like all the "what ifs" can be very overwhelming at times. I remember when Noah was first diagnosed how fearful of RTS I was. I didn't want to look at any pictures of other kids with RTS. I didn't want to even talk about it with any of my family members. I was petrified to join the list serv that my husband had already joined. I was fearful. I chose fear. Lately I have been up almost every night worrying about Noah not walking independently yet. Worrying about whether or not I will hear him talk to me one day. Worrying about school and evaluations. I chose fear. But today I have decided I will choose hope instead of fear. Today I understood Noah. It may seem small to some people but to me it is huge. Noah is pointing and gesturing to everything he wants or needs. He is using his pictures to tell me what he wants to drink and eat. Even though my sweet baby can't say words yet I understood. Today I will hope. Today I will embrace the small things in life. Today I will let go of fear.