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.

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.


Kerri H said...

Great post Kristi..thanks for sharing..I have a good story that I will have to email about Logie's pediatrican..

drurylove said...

It is a shame that there are so many Drs out there that have little to no respect for humanity as a whole.. Good bedside manner should accompany this profession, but often times it does not. Being in the medical field and personally witnessing what physicians do and say behind other peoples backs is disgusting to say the least. It deterred me at first from wanting anything to do with the medical field. Now it makes me want to become involved and be that person that makes a difference in the world but actually act like a human being and not a lifeless robot. I know we talked about this quite a bit today Kristi. I know there are so many physicians that lack the proper common sense and heart to be in this profession. There are also people out there like me who go into the profession to make a difference and have a passion for the needs of other people. Very well said Kristi!!

Kelly said...

well said...you are such a great mom and advocate for Noah!

Kelly W.

marilynd65 said...

Kristi not only are you a great advocate for Noah but for all other children with special needs. I am proud of you for taking a stand and speaking your mind about this issue. Love you, Mom