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, December 17, 2009

Please Stop.....

If you are reading my blog and you use the word "retard" or "retarded" as slang please stop. I am posting about this, because lately it seems I hear that word used in a derogatory way every single day of my life. Yesterday on my way to get my hair done I was listening to t he radio when I heard "Let's get started, Let's get retarded". Then I was sitting in the chair getting my hair done when I heard another hair dresser making fun of a customer she said "Look Retard" as loud as she possibly could. This is a straight cut into my heart. When I hear the word used in that manner I can't describe the pain I feel.. People should think before they open their mouth. That hair dresser didn't know who was sitting around her. I am not hostile as I write this but I am saddened by the world at times. If you are one of those people who think it is ok to use that word as slang please think. You are breaking a mom's heart, a grandma's heart or a Aunt's heart. If you have a loved one in your life who does have mental retardation you understand me. I am not going to sit back and listen anymore. I will speak up. I will stand up for my son. I will not turn the other cheek on this one. I will not listen anymore. Once and for all stop the slang use of the word "retard".

Wednesday, December 9, 2009

Less Than Perfect

Dear Noah,

I know you can't understand this letter right now but I'm hoping in the years to come you will. I want you to read this letter when you are older and keep it close to your heart always and forever.
I don't ever want you to forget what mommy is telling you. You will encounter some ignorant people in this world that will see you "as less than perfect" they will see you as different and will wonder why you do certain things. They might assume they know you by looking at you or watching how you interact with the world. They might not understand the beauty you hold within. They may believe the way "they" do things is the "perfect" way the "only way." Little do they know Noah. Little do they understand. The most important thing I want you to know is that God knew you before you were conceived. God knew your soul, your heart, your goodness and self worth. He knew exactly what he was doing when he created you. He is proud of his creation and every day he sees the amazing things you accomplish. The ignorance in this world can he hurtful and sad. If only everyone could understand differences in people instead of judging. Don't be sad when you encounter these people Noah, feel sorry for them. Feel sorry that they don't see what God sees and all the people that really love you see. You are perfect Noah. Mommy and Daddy will always remind you of that. In most people's eyes a baby that is born with rosebud lips and pink cheeks is the only kind of "perfect". That is not true Noah. There is all different kinds of "perfect." We are all perfect in our own unique way. Feel proud of who you are and don't ever let anyone make you feel otherwise. At the end of our lives some of us worry about whether or not we will be welcomed into Heaven. You don't ever have to worry Noah. God will be waiting for you with his arms open wide. He will once again embrace his most special creation.

I love you so much son and I'm so proud of you,

Love, Mommy

Wednesday, December 2, 2009

Will He Or Won't He?

I have so many different feelings on different days when it comes to Noah's speech. Some days it cuts like a knife that he is not yet saying words (he does say "mom mom" all the time and said "bye bye") But other days it is just a part of who Noah is. I remember how naive I was when Noah was first diagnosed. I remember thinking if I had anything to do with it Noah would talk and he would not be "that" delayed.. I remember reading of children with RTS who were non verbal and thinking to myself that will never happen to Noah. I have learned so much in the past three years. I have come a long way. The fact is I don't know if Noah will talk or not. As a parent this is so hard to accept and even imagine but I've had to. I have learned a lot of "sign" and have taught my son to "sign" something I never thought I would have to do. I have taught my son to use pictures to choose whatever he desires. I never even knew this form of communication existed before Noah. I have read about all kinds of different communication devices. I have had to accept whatever the future holds for us. I hope with all my heart that I will hear Noah say "I love you mom" but I guess he already has. He has said it with his smiles, laughter, hugs and kisses. I hope soon he will sign "I love you". I say and sign it to him every night. I will never stop hoping and praying.

Tuesday, December 1, 2009

"See Mom, I Really Do Love Nicholas"

This is how I caught Noah and Nicholas while watching a movie. Noah didn't know I was in the room and he reached out to hold Nick's hand. When Nick let go Noah continued to grab for it. He was also rubbing his head and snuggling up next to him. It melted my heart. When Noah thinks I'm not looking that is when he shows Nick all the affection in the world. I know they both love each other so much. And I know that they will always be there for each other. Knowing this makes me feel so much peace in my heart.