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, September 29, 2010

Where is Wiggle's?

Noah doesn't like the t.v show The Wiggles but he sure likes The Wiggles doll. He was introduced to The Wiggles doll at school. Every morning they have 15 minutes of free time at school. As soon as we walk into the classroom, Noah goes straight for The Wiggles doll. He looks around for someone to get it off the shelf while signing "please" continuously. Noah's teacher allows him to take Wiggles home because she said "Noah I know you will take good care of him." Her words not mine. This is how I found Noah and Wiggles this afternoon.

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?

Tuesday, September 21, 2010

Noah Said What???

When I picked Noah up from school today his teacher had some big news for me. She told me during circle time Noah blurted out "cockle doodle doo". I don't even know if I'm spelling that right but you know,what the Rooster says? Anyway, she said everyone stopped and said "That was Noah." Too make sure everyone heard him he repeated himself. I looked at her with disbelief and she said "yes he said it again on the way to the potty." The image of Noah sitting around at circle time and blurting out 'cockle doodle doo" makes me laugh hysterically. I don't get it! The child's only word is ma ma besides babbling and then blurts out "cockle doodle doo." It's just too funny. I wonder what else Noah has in store for me? I'm so excited today to find out. I think he's going to fly this year.

Thursday, September 16, 2010

The Window With Two Sides

It's been a few years but I still remember
My eyes hazy and mouth held tight
Looking through the window that "appeared" to be perfect, with no streaks
All I could do is watch with a intense desire to release my feelings of fear and sadness
Month's went by and the window still stood strong in front of me
Still appearing "perfect" before my eyes
I grew to despise the window
I wanted to scream "let me in, I belong there too"
Then year's went by
The haze from my eyes faded and my mouth relaxed
The strength grew within me to confront the window
As the haze cleared from my eyes, I noticed the window had smudges and streaks
The window was full of imperfections I didn't notice before
The other side of the window was a lot like my side, with it's own moments of fear and sadness.
I gently reached for his hand and stepped through the window
Together, we have found joy,laughter, tears and sadness, on both sides of the window
We are all the same
We are all perfectly different

Tuesday, September 14, 2010

I Miss Him

I miss Noah. The school has extended Noah's day until 2.30 to prepare them for kindergarten. I miss him. I know it's the best thing for him right now and I know I should be doing things for myself but it doesn't make it any easier. Nicholas misses him too. He looks for him until he comes home. It is so hard for me to let go. I feel so empty when he isn't with us. I miss his laughter. I miss his hugs. I even miss his whining sounds. I hope the lump in my throat eases up soon. I hope this gets easier as time goes on. I know I will always miss him when he's away.

Thursday, September 9, 2010

Now That You Are Almost Four

Dear Noah,

I just got goosebumps when I wrote the title "you are almost four" I can't believe you have been on this earth and in my life for four years. Wow, what a difference you have made in the person I am today. I can't begin to tell you how proud I am of you. I will try to remind you of all the great things you have accomplished this past year. You are walking so beautifully that you are practically running. You worked so hard to get to this point and I know you are much happier with your independence. You are starting to use a communication device to make requests and the look on your face when I understand, makes my heart so happy. You know how to use a lot of signs to communicate to the people who understand you. You still love to swing, play in water, listen to music and mostly manipulate buttons. You are awesome on the computer. And you figured out how to microwave a binky yesterday. (you little stinker.)You love to play with your little brother. Your favorite game to play is taking turns opening and closing doors. The laughter from both of you makes me smile. I know you will always have a brother that adores you. You are both so lucky to have each other in this life. You are going to school five days a week now. You participate in class, follow directions and socialize with other kids. You are going to the potty sometimes at home and school. You are working hard with that challenge. You are beginning to find your place in the world. You are blossoming and spreading your wings. I am so excited to see what you have in store for us this year. Keep working hard Noah and know that Mommy and Daddy are here to help when you need us. Your strength continues to amaze me. I love you, Mom

Wednesday, September 1, 2010