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, January 28, 2010

Time To Brag About Noah.

I haven't given an update on Noah in quite some time. Noah has decided he is going to try and walk by himself again. After he had the two falls and ended up in the ER he wanted to hold my hand again. It has been almost four months and he is slowly getting his courage again. Today I let go of his hand and he looked at me with a big smile and walked to the computer in front of us. He was so proud of himself. Later during the day I let go again and he didn't panic. He just walked to where we were going. Noah has been wearing a weighted vest for the last month and it has improved his balance and his anxiety. Thank you to Noah's uncle Micheal for working so hard making his vest. It really has made a huge difference. On Monday Noah will be starting horse therapy. We are so excited to see how he does with this. Ever since Noah was diagnosed I have wanted to include horse therapy. I am so excited. We also decided to wait for Noah to start school in August. It took a lot of sleepless nights and undecided feelings but the decision is made finally. I was just so nervous with him being at school and falling back like a board and getting seriously hurt. This way he can improve his falling techniques and I can work with him more. Yesterday I found out Noah knows most of his colors. The only ones he didn't know were gold and silver. He is amazing. He also knows the majority of shapes even oval, diamond and star. Those aren't even the basic ones. I am so proud of him. He knows so much it is unbelievable what he soaks in. He is also picking up new signs here and there and makes up some of his own signs. We try to correct him but he is determined that the sign for "yes" is to hit his head with his hand. ha ha.. Overall he is doing awesome and we are so proud of him...

Tuesday, January 26, 2010

Sweet Nicholas

There are so many things I love about you sweet boy. I wanted to take the time to write out my favorite things about you. I can't believe how much you have grown in your 7 little months. You have become such a special part of our family. Your smile will light up the whole room, no matter where we are. You smile at every stranger and everyone you love with such delight. I love the way you wiggle your little body and dance when you hear music. I love hearing you babble "da da" all day and I even hear "ma ma". I love the way you watch your brother with so much admiration and love. I love the way you say "mmmm" when you are being fed cereal. I love the way you smile at me every morning when I get you out of your crib. Your little toothless mouth is so cute. I love the way you clap your hands when I sing to you and your brother. I love the yucky face you make when you eat veggies.. (especially squash.) I love that you play with my hair if I lay my head in your lap (just like Noah.) I love the way you look at me with such concern when you think I'm hurt. (I stubbed my toe really bad yesterday it brought me to tears.) There are so many things I love about you. I have only touched the beginning. You are such a beautiful, amazing, funny little boy. We are so blessed to have you as part of our family.

Hugs and Kisses,
Mommy

Monday, January 25, 2010

You Think I Need Thicker Skin? Or Do You Think I Am Weak?

Some people in my life have mentioned I need thicker skin. I'm not sure if these people quite get "my life". I am by no means asking for anyone to feel sorry for me because I don't. I love my son with all his challenges and strengths. If you are someone who thinks I need thicker skin please walk a day in my shoes. Once you have done that then you can assume you understand my life. I think over the past 3 years I have developed thicker skin. I have seen a lot, heard a lot and had to endure a lot. Try to cut through my skin. Answer these questions and see how thick your skin would be at this point.

Have you ever watched your child hooked up to monitors, IV's, breathing tubes, feeding tubes and laying helpless in the NICU?

Have you ever been walking down the street with your child who yes happens to have special needs and hear the word "retard" making fun of someone else?

Have you ever had to wait three years to see your child take his first steps?

Have you ever had to struggle to figure out what your child wants because he can't verbalize yet? At 3 years old?

Have you ever sat in a room with a stranger who tells you your child has some strange syndrome you have never heard of before?

Have you felt so alone because not one Dr or Therapist has ever heard of your child's diagnosis?

Have you watched your child go through several surgeries?

My skin is thick enough and I'm strong. I won't give up. I won't back down. And I'm not going to let anything break me...

Noah, Nick and Dad Posing For Camera





Thursday, January 21, 2010

Enter My World Mommy

Below is a passage written by a parent that I read from time to time. These words open up my eyes when I'm having a off day or I'm feeling not so hopeful. It touches me so much that I wanted to share it with you all. Again this was not written by me.


My son cried all night last night. Sometimes he does that. I long to help him, but I can't. He is autistic,they tell me, locked inside himself, inside a world the doctors tell me I have no access to. I don't know what he wants. He puts his hands on my face and cries "mamma mamma" -one of the few words he can and I feel my heart break and shatter because I can't help him. It's like when water freezes and splits open a rock, there is no way to mend it, there is no way to stop it. My heart will always be scarred and broken by his tears.

When I first learned of his diagnosis, I was determined to pull him into my world. I sat endlessly trying to make him speak, make him look, make him do. And then slowly I began to realize that his world is beautiful too. So I stopped trying to yank him into my world and instead tried to enter his.

We sit for hours at the fountain in town watching the water skip over the stones and cascade into the pool below. We fall asleep watching snowflakes drift lazily past the window, his cheek against mine, his hand holding my little finger. We watch a bug make its way up the wall.
\
I learn things about him. He loves the color blue. He likes Led Zepplin and country music. He can't stand still when he hears the opening bars of a song he likes, he dances and giggles and gurgles until we all giggle, too.

He loves without restraint, without strings, without malice. His heart is so innocent and so pure. It is breathtaking.

He sees things no one else sees. To me it is a stone, to him it is a universe.

So I call him my little Dutch boy. To remember that windmills are as beautiful as gondolas. He fills my world with wonder and unbelievable joy.

Tuesday, January 19, 2010

Very Delayed Christmas Morning Pictures.












These are some very delayed Christmas morning pictures. I forgot to share them when we got home from vacation in N.Y with my parents. Excuse my Christmas morning outfit I know it's hideous. There are pictures of my mom helping Nicholas open his presents (in case you were wondering who it was.) I think Nick was more interested in presents than Noah. Noah was content playing with his old toy (his favorite drum.) Enjoy the pictures.

Wednesday, January 13, 2010

We Have a Happy 3 Year Old





Noah is a sensory kid for sure. He craves vestibular stimulation like you wouldn't believe. Jumping, spinning, bouncing and swinging. While I was in NY with the kids Tom built Noah his "dream room" you got it a sensory room. Like the ones you see in Occupational Therapy. We knew this would be the perfect Christmas gift for Noah. When he is in the sensory room during OT he is calm, happy and in his element. We bought a therapy swing (thanks to the idea from watching Caden in it) from Southpaw Enterprises. Tom hung it from the ceiling and it swings, bounces and spins. He likes to spin in it while playing his favorite toy. Tom also built two boards with white blinking lights attached and invested in some lava lamps and a disco ball. It is our favorite room to hang out in during the day. Nicholas even loves to play in there while watching Noah spin. The good thing is the swing holds up to 2oo pounds (very sturdy.) Thank you Dad for working so hard on Noah's room. He says "thank you and he loves you."

Monday, January 11, 2010

Why Am I Finding This So Hard?

I have lost so much sleep I can't even think straight. I'm not sure why I am having such a hard time with Noah going to school. I keep going back and forth on whether or not to send him. I searched for a long time for the right preschool and I finally found one. I don't want to let go. I am so scared I can't even being to express it. I have dreaded Noah turning 3 because I knew that's when most kids around here start preschool. For the last three years I have been able to protect Noah and know that he is safe. It bothers me to the core knowing that he won't be able to tell me if someone is mean to him or if he doesn't like the teacher. I'm so scared to put him in the hands of someone else to care for. I know what Noah wants. I know when he "signs" what he means. It's like in "our world" everything is normal and being different is our way of life. If I'm being honest the thought of walking out of the classroom and leaving Noah terrifies me. I may sound extreme to some but that is how I feel. Terrified.. I don't know what to do about feeling this way. I don't know if he is ready. I hate this.