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, January 24, 2011
Sometimes It Just Plain Hurts!
It's time for some honesty 101 on my blog. So, If you are feeling ever so cheery today you might just want to close out of my blog. I'm inspired to write these feelings I'm having because I just can't shake them. Yesterday a good friend of mine (who happens to have a child with RTS) emailed about her daughters B day wish list. One of her wishes was to not be "different" and to not have the symptoms of RTS inside of her. Can I just say that ripped my heart in two. This beautiful little girl wishes she could be like everyone else. This same little girl who has my son's syndrome. It made me so incredibly sad. It made me look into the future and wonder. Will Noah know he is "different"? Will Noah secretly cry and wish he was like everyone else? Would it be easier if Noah didn't realize he was "different"? As I'm writing this my heart is breaking again. It is so incredibly hard as a mom to imagine the challenges my son may face ahead. If you are a mom you can understand the pain I'm speaking of. The pain that hurts like nothing else you have ever experienced. The pain that your child may not be accepted or may feel isolated. Yes, I know I sound incredibly negative but my blog is my way out. I can't pretend that being a mom to a child with challenges is a bowl of cherries all the time. Sometimes it's hard. Sometimes it feels like a up hill battle. Sometimes I cry until I feel nothing at all anymore. That is reality. That is my truth. Other days are better. Most days are easy. Then there is today..My heart goes out to you my friend and Noah's RTS sister.