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.

Wednesday, May 26, 2010

This Part Is Getting Easier

When Noah was an infant, I dreaded anyone asking me questions about his diagnosis. I hated saying the words "Rubinstein Taybi Syndrome". I especially hated the syndrome part. It was so hard to answer when someone asked what it was. I never knew what to say. Sometimes I tried to make it sound like no big deal so people would stop asking questions. Today when I was waiting for Noah to come out of therapy, I realized how far I have come. (yes I'm going to give myself a pat on the back right now) I was talking to another mom about Noah. The words Rubinstein Taybi Syndrome didn't sting, they were just words. It was just a normal conversation explaining the different things Noah has to go through. It didn't bother me to explain to a perfect stranger that my son has a disability. It only bothered me a little when she asked "Is he going to talk." I swallowed kind of hard and just answered "I don't know but I'm giving him every opportunity there is to communicate." I was proud of myself this morning because I didn't hold back. I realized that the person I was a few years ago is gone. The person I am today has a lot more courage. I am grateful for that.

Saturday, May 22, 2010

Noah says "go"

Well, not verbally but he sure knows how to use the sign. Noah has been cracking me up lately with his ability to sign very forcefully. When he really wants to get his point across he signs so there is no mistake what he is trying to say. He loves to sign "go" so here is a funny story. I'm sure my neighbor won't mind me telling it so here goes. The other night Noah was eating dinner,when our neighbor stopped by. He was in a bad mood and wasn't about to take one bite of his food. If Noah won't eat dinner (which is most of the time) I just ignore it. The minute I ask him to eat or make a big deal out of it, food goes flying. I know that he will eat when he is hungry. In the meantime my neighbor thought it would be a good idea to pick up Noah's spoon and try to feed him. Are you serious? Noah is Mr Independent and there is no way he is letting anyone put a spoon in his mouth. So, Noah looked at my neighbor and as hard as he could possibly throw his arm out, he signed "go". And off she went to the door. She was laughing and didn't get upset but I laughed until I cried. It was just so funny. Shall I stay or shall I go? Noah thinks you should "go".

Sunday, May 16, 2010

Almost One Year Ago









I can't believe in just 3 weeks we will be celebrating your first birthday Nicholas. You have changed our lives forever in so many beautiful ways. You are so little but you bring me comfort when I'm sad. Some days I feel like there is not enough of me to go around but it always seems like you understand. Even when you wake up at the crack of dawn,your smile makes me smile. Your laughter brings so much joy to our lives. When I hear you laugh in the other room, I can't help but laugh myself. I am so glad you are happy. I love the way you look at your big brother with so much curiosity. I know you are going to be so protective of Noah. It seems like just yesterday you took your first breath. And now very soon we will celebrate the first year of your life. I love you sweet boy.

Monday, May 10, 2010

I Feel The Need To Repost This.

I posted about this a few months ago but after a recent incident, I feel the need for a repost. We all want our children to be able to communicate with us somehow right? Some of our children use words, some use sign language, some just gesture, some use communication devices. Aren't these all different forms of speech? Why do some people insist on putting their two cents in about the alternative ways to communicate? For example the popular answer I get when a stranger notices I'm signing with my son. "Won't that delay his speech even more"? Or the ever so popular "I won't teach my child to sign because then they won't talk.". I know these statements are made out of pure ignorance but I tell these people to please do their research. Sign language will not delay any child from speaking. As a matter of fact it will only enhance their vocabulary if and when they speak. Also sign language has been proven to increase a child's IQ. I am the mom of a child who is nonverbal (at the present time) and I'm going to give him every opportunity to communicate. I just wanted to put this post out there for anyone that has not done their research. If you see a parent using alternative communication with their child, know that they are opening doors for them. Why not open several different doors? We don't all have to be heard only through our voices.

Friday, May 7, 2010

Dreams and Understanding What Really Matters.

Today I was swinging Noah in his room, when his laughter gave me goose bumps. He laughed so hard and for so long. The sound of his sweet voice and the fact that he is so happy, made me think of dreaming. The dreams that a lot of parents secretly dream for their kids. Sometimes they dream their child will be a Dr or maybe a athlete. Or they dream their child will be the most popular kid in class. If you have a girl, maybe you dream they will have the most beautiful wedding ever or they will do something magnificent that changes the world. Maybe if you have a boy, you will dream he will be a football player or date the prettiest girl in school. All parents have dreams for their children. Sometimes parents dream for their children the opposite of what their child really wants. This is all part of being a parent and wanting the best for your child. I have been taught another lesson from Noah. As I was listening to him laugh this morning, I knew my only dream for my kids is happiness. All the other stuff doesn't matter. If my children laugh every day and know they are loved for the rest of their life, then I have done my job. Thank you Noah.

Thursday, May 6, 2010

Look At Us.

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Nicholas who is almost 11 months now got his first haircut last weekend. He was such a angel sitting in the chair. When the guy cutting his hair said "ok be still" he only moved his eyeballs. He laughed a lot and wanted to play with the brush. He acted like he had his haircut a million times before. Here are some pictures of Nick sportin his new haircut.

Some Noah news. This week Noah went to a tricyclethon at his therapy center. The company donates these bikes to children with special needs. The back of the tricycle has a handle that you can push if the child isn't quite ready to pedal with his legs. Did Noah need the help from the handle? Nope, he left his therapist in the dust. He took off and pedaled all by himself. He wasn't too happy about being there because it was horse therapy day. He kept signing "go" "horse". I would have rather been at horse therapy but it was canceled for the day. As you can see by his facial expression the tricycle didn't compare to his horse Cocoa. But, he will be getting a new trike in a couple of weeks.

Saturday, May 1, 2010

Blog Help

For some reason I can't comment on blogs that don't have the word you have to type in. It will say choose profile. When I do it takes me to the google account to sign in. When I sign in, it brings me back to the comment but doesn't post it. Does anyone know how to fix this? I wanted to say that I'm praying very hard for Sammy. I can't post a comment on his blog but I want his family to know I'm thinking of them. Get well Sammy.