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.

Sunday, September 26, 2010

Do You Want To Join Me?

On the path of hope? I have been doing a lot of thinking lately about my journey with RTS. Recently, I sent a article to the RTS list serv I belong to,regarding believing there is goodness in the human race. The article's main point was about people staring in public when you have a child with special needs. The author of the article introduced the concept that most people are not hateful and being mean by staring. They may be simply curious or willing to lend a hand if needed. There have been times over the last year or so when I have dealt with the stares. My first reaction was unlike the author's, I always assumed the person was annoyed or being ignorant. This reaction does nothing for me or my precious child. This reaction only closes the door to my son being treated as an important part of our society. It also shows bitterness within me and I refuse to live with that feeling. I refuse to turn away and sulk because a person happened to give me a look or made me feel uncomfortable. Instead I will put those feelings aside. I would rather believe that people are generally good. I would rather take the negativity and throw it out the door. For my precious son's benefit,I will do my best to look at society as a whole in a different light. I believe it's worse for someone to quickly look away than stare. Looking away, to me, means my son doesn't exist. So, I will take hope over negativity. I will hope for the best in people before assuming the worse. This doesn't mean I'm living in a fairytale world. I realize not everyone is a bed of roses but this is what I choose. Do you want to join me?


Cindy said...

Yeah! I'm glad you're here too. I've never experienced mean stares, just wondering stares. And I remember what I was like before having Natalie...clueless! I take every opportunity to say hi to other special needs kids, especially those that are severely disabled...who ever talks to them? It takes examples to make the difference.

drurylove said...

Very well said Kristi. There is a lot of beauty in this world and no that does not mean that you are living in a fairy tale. It is good to be able to put negativity to the side and believe that there is some kind of goodness in this world. I agree with you 100% when you say that you would rather a person look than look away. Noah is a handsome dude. I could stare at him all day long! Cock a doodle doo Johnny Cash!

marilynd65 said...

Good for you, Kristi! I learned an important lesson when Noah was only a couple of months old. I was singing Twinkle Twinkle Little Star to Noah when we were waiting for his mommy who had a doctor's appt. An older woman was staring at Noah and I assumed right on the spot that she was staring at Noah for the wrong, negative reasons. I became on the defensive when she asked me his name and I stupidly said he has RTS. She replied by saying NO what is his name...he is beautiful! She proceeded to sing Twinkle Twinkle Little Star in Polish. She saw Noah as a beautiful child and not as a child with RTS or a disability. I will never ever make that mistake again. She did teach me a good lesson that I will never forget. I love you, Mr. Noah and I am so very proud of you. Nana

marilynd65 said...

Kristi told me Noah was 2 yrs. old not 2 months old in the entry I just wrote.

Angelica mom to JesusRTS said...

I'm with you!!! recently i have changed my views a little i used to get so mad and sad when people would stare or ask Jesus's age and upon hearing something they did not expect because they thought he was younger they would sit there in silence and i took it as they were not accepting now i relize a lot of people just dont know what to say dont know how to ask, so instead of letting them sit there with there jaw open not knowing what to say, now as i say his age ill also add something he just recently started doing like scooting/crawling, or how he now eats food. when i add this kind of things with a proud mommy look people will be more warm and welcoming to Jesus and will continue talking to us :)

sorry this is so long! I'm just happy that i'm with you on this =)