Some people in my life have mentioned I need thicker skin. I'm not sure if these people quite get "my life". I am by no means asking for anyone to feel sorry for me because I don't. I love my son with all his challenges and strengths. If you are someone who thinks I need thicker skin please walk a day in my shoes. Once you have done that then you can assume you understand my life. I think over the past 3 years I have developed thicker skin. I have seen a lot, heard a lot and had to endure a lot. Try to cut through my skin. Answer these questions and see how thick your skin would be at this point.
Have you ever watched your child hooked up to monitors, IV's, breathing tubes, feeding tubes and laying helpless in the NICU?
Have you ever been walking down the street with your child who yes happens to have special needs and hear the word "retard" making fun of someone else?
Have you ever had to wait three years to see your child take his first steps?
Have you ever had to struggle to figure out what your child wants because he can't verbalize yet? At 3 years old?
Have you ever sat in a room with a stranger who tells you your child has some strange syndrome you have never heard of before?
Have you felt so alone because not one Dr or Therapist has ever heard of your child's diagnosis?
Have you watched your child go through several surgeries?
My skin is thick enough and I'm strong. I won't give up. I won't back down. And I'm not going to let anything break me...
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.