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.
Thursday, July 29, 2010
See Me Not My Disability
I was going to blog about the conference but I feel passionate about something else today. On the RTS list serv that I belong to, there has been discussion about the harsh things Dr's have said concerning our children. A lot of parent's have shared their personal stories about how their child was diagnosed. I am appalled at some of the things I have read. Dr's telling Mom's and Dad's to institutionalize our kids or just throw them away because of their disability. Or telling parent's that they shouldn't invest too much into their child because they will be low functioning. What?? Are you serious? These are professionals. If people like this can't get past differences, how is it possible to change an every day person's view on people with disabilities? I remember when Noah was a baby and our stupid pediatrician at the time addressed Noah as "Rubinstein Taybi Syndrome" rather than Noah. We never saw that Dr again. Some people are just pure ignorant. My child is a person with a name and feelings and everything else that goes along with living. He is not just a syndrome or developmentally delayed or whatever other word that goes along with it. He is Noah. All of our children deserve so much more respect than what is given sometimes. And I'm not saying everyone is like this just a overwhelming portion of our society. If only people that are so called "normal" lived like our children do. The ignorant people that view our children as irrelevant and just disabilities don't realize what they are missing. And to all the Dr's out there that told some parent's that their children will amount to nothing, Shame on you. You don't deserve to be in the medical profession. And to all the Dr's out there that have been sensitive and supportive, Thank you.