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.

Friday, November 27, 2009

What Are Noah and Nick up to?

It's been a long time since I have updated on my two little munchkins so here goes. We think we have finally found a preschool that we like for Noah. I have been searching like crazy for weeks now. We decided not to go with the public school system so we have been researching private preschools. It has been a long journey trying to find the right place to suit Noah and honestly to suit me. I hated almost everything I saw until last week. I'm not sure when Noah will start but I'm thinking after the holidays. He so desperately needs the social interaction. The school is an inclusion preschool so he will be with children with special needs and typically developing children. They have a great schedule and he would only go three days a week. He will still receive his therapies privately. Noah is still scared to walk after his two falls. Both times he fell straight back like a board on his head. I have had to go back to the bathrobe tie (if you recall I used that before) to gain his confidence. It is a hard blow to see him walking like a pro to refusing to walk. It made me sad but then I realized that he needs to gain the confidence himself in his own time. I have backed off, knowing in my heart that he will walk again.

Nicholas will be 6 months old soon Dec 9th. I can't believe how fast time is flying by and how big he is. He is already in 9 month clothing and even those seem to be tight sometimes. He is so tall. He has started solids and eats like a pig. He has loved everything we have fed him .. He is babbling like crazy and laughs all the time. He really is a "angel baby". I took him to the mall and it felt like I was by myself. He never made a peep from his stroller. He looks at his brother with so much admiration and is interested in everything Noah does. He is rolling over, sitting up and showing interest in all different types of toys. He adores to watch "Signing times" with his brother. He almost shows more interest in it than Noah. He loves to watch Noah play his computer games and is fascinated with life in general. He still wakes up sometimes in the middle of the night but hopefully that will stop soon. Both Noah and Nick are doing wonderful.. Thank you for reading about my two munchkins..

Tuesday, November 24, 2009

This is Noah being Noah



Yes this is our life. Chasing vacuum cleaners and loving it. I wish we all found such pleasure in the smaller things. Life would be so much more fun..

Monday, November 16, 2009

Wednesday, November 11, 2009

Will You Stay In This House and Rock My World?




If you know what I mean by the caption then you are just as embarrassed as I am. I put my headband on Noah and pretended he was from that reality show "Rock of Love.". The trashy Brett Micheal's dating show that came on vh1. I can't believe I just admitted that I watched that show on my blog but the sad truth is I did. Brett always wore a ugly headband to cover his balding head (so that is what the blue headband symbolizes) and at the end of the show his question to the trashy girls competing for his affection was "Will you stay in this house and rock my world?". So I was bored while Noah was eating lunch and as I took these pictures I asked him the same question. We laughed and laughed together during his whole lunch.. Ha Ha

Sunday, November 8, 2009

Hug Your Son or Daughter Tonight

As I am writing this there is a little boy who is 3 years old fighting to breathe. I found his blog only recently but have been so touched by his story and the strength of his parents. Tonight I feel immense pain for this family and the loss they are about to endure. They are with their son in the hospital praying for him to go home with God. He is suffering and has fought long and hard on this earth. I have never met this family but last night I cried for the pain they are feeling. I pray that they will get through this heart wrenching time and that their son will no longer feel pain. Tonight I look at my beautiful children and am thankful they are home with me. I am thankful they are not in pain. I am thankful that I can put them to bed and kiss them goodnight. I am thankful for so much right now. Please pray for this family. The little boy's name is Gavin. Please pray that his suffering ends soon. Hug your children and thank God you can tuck them in tonight.

Thursday, November 5, 2009

Pablo and The Pumpkin










We had the absolute best Halloween ever with the kids. It started out a little rough with Noah cranky but then he came alive with the spirit. Our neighborhood was awesome for trick or treating. I was not going to go door to door but if you could see how festive our neighborhood was, you would understand why I changed my mind. Noah was Pablo the Penguin and Nicholas was a pumpkin. This was the first year Noah was interested in walking up to the doors. Every house we went to he tried to walk in the front door. It was so cute. Nicholas loved all the lights and just stared at everyone dressed up. One of our neighbors had a haunted house that we all walked through. The kids didn't get scared at all. It was all around a great time for all of us. Some of the pictures show the fussy moments though. Noah was annoyed with his penguin hat and wanted it off the whole time. I think Nick was feeling the same about his bulky pumpkin outfit.

Tuesday, November 3, 2009

A Trip To The Pumpkin Patch












I am so delayed posting these pictures but they are so adorable. We had a great Halloween and I promise to post pictures of the kids in their costumes tomorrow.

Monday, October 26, 2009

Sunday, October 25, 2009

Noah's Real Birthday Bash.

























You didn't really think we would only have a boring home party did you? No way Mr social butterfly would not stand for that. We had Noah's real birthday bash on the Sunday following his birthday. Where did we have it? None other than Noah's absolute favorite place in the world Dave N Busters. If you don't know what Dave N Busters is let me fill you in. It's a restaurant attached to a huge video arcade. Noah loves this place for a few reasons. It's dark (he hates sunlight), its bright with lots of blinking lights and its crowded. Noah loves to be in a crowded place. I know I hate crowds but hey Mr. Social Butterfly gets what he wants on his third B day. We had some very close friends and Noah's Grandma and Grandpa celebrate with us. We were sorry that my family that lives out of town couldn't join us . We missed you a lot Mom and Pop and all of Noah's Aunt's and Uncles. It was also one of our close friends birthday so we celebrated it along with Noah's. Noah got a lot of really cool gifts. Thank you everyone who thought of Noah on his special day. It was such a fun day for Noah and we feel so blessed that we shared his day with so many special people. Here are some pictures of his B day Bash. He hated when we sang Happy Birthday to him. He was scared of the candles on his cake.