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.

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.

Thursday, October 22, 2009

Noah's Third B day Part One

OK so I'm a little late since Noah's B day was last week but I have been "blog lazy". Last Thursday was Noah's third B day. That's right I now have a 3 year old. I can't believe it. HAPPY BIRTHDAY to my amazing, courageous, beautiful, strong, funny and semi walking 3 year old. I love you so much. On the actual night of Noah's birthday we celebrated at home quietly with just us four. I made Noah's favorite homemade macaroni and cheese (my mom's yummy recipe) and a homemade peanut butter cake. The cake didn't turn out that great but Noah loved it. Sorry Nicholas you can try it next year. We sang our little hearts out to Noah but he wasn't too fond of the candles on the cake. He actually got really scared and cried a little bit. I wasn't expecting that but he got over it fast. Here are a couple of pictures of his night at home. I look a little bit ridiculous but I posted the pictures anyway. HAPPY BIRTHDAY LITTLE MAN.

Wednesday, October 14, 2009

Noah Teaching Nick a Few Things.

Here are some cute pictures of Noah teaching Nick how to use his old toys. Stay tuned for a special post for Noah's third B day which is tomorrow. I can't believe how big my boy is.

Saturday, October 10, 2009

A Different Perspective

I'm not really sure how to put this into words but I will try. I have heard a lot of people say that having a "typical" child after their special needs child helped heal old wounds. The interesting thing is, I don't know if I have experienced that same feeling. Of course after Nicholas was born I was glad he was healthy and thriving. I was relieved that he wasn't whisked away to the NICU while I lay feeling helpless and fearful. At times after Nicholas was first born I felt so much pain inside of me. I cried myself to sleep a few times remembering what Noah and I went through. I felt guilty that I was feeling this way right after he was born. I remember the first night Nicholas was home I went into Noah's room and bawled beside his crib. I had the hardest time accepting the "typical" birth and "typical" all together. It seems weird to write this out but it's the raw truth. "Typical" is still so bizarre to me at times. I don't want anyone to think I am wishing things were different because I'm not. I guess when you start out in Holland it's a shock when you get to Italy. Everything is faster when you are so used to a slower pace. I am so happy that Nicholas is reaching all of his milestones but at the same time I feel a twinge of pain. This is what I don't understand. I suppose it's a pain for Noah even though Noah could care less that it took him so much longer to do the same things. I hope that someday the wounds that still surface sometimes will go away. I don't know if that is realistic but I will hope anyway.

Wednesday, October 7, 2009

He Will Have A Voice

A couple of comments I have received from strangers lately inspired me to write this post. Yesterday Noah was in therapy and I was in the waiting room talking to another mom. She told me her son was 2 and speech delayed. I told her my son was almost 3 and also speech delayed. I proceeded to tell her we use sign and pictures at home to help Noah communicate. She said "I have not signed with my son because that will make him lazy and not want to talk.". I then said "Actually its a proven fact that signing and any alternative communication does not delay speech any further." She looked at me like I had two heads and the conversation ended. Then over the weekend we took the kids to the park for a few hours. I was pushing Noah on the swing and he signed that he wanted to "stay on". I asked him again "stay on" and he signed "on" and "more. I always verbalize when I am signing with Noah. A lady was watching us and asked if Noah was signing? I said yes and didn't say much more. She then told me that she never signed with her children because she was scared they would not talk. I was rather annoyed at her ignorance but just smiled and continued swinging Noah. For anyone that is confused or may not understand. Signing and alternative communication will not delay Noah any further. I am saying this for the people who love Noah and want the best for him. Also for the people that love Noah and may feel uncomfortable asking me. I don't know if Noah will talk or not. I can't tell anyone that. That is in God's hands and it is something I have had to come to terms with. It is one of the hardest things I have ever had to accept. What I do know is that I will give Noah every opportunity to have a voice. Whether it be through sign, pictures a communication device or talking. He will be heard. I will make sure of it.

Monday, October 5, 2009

Have You Forgiven Lately?

To forgive
Is not to forget.

To forgive
Is really to remember

That nobody is perfect

That each of us stumbles
When we want so much to stay upright

That each of us says things
We wish we had never said

That we can all forget that love
Is more important than being right.

To forgive
Is really to remember

That we are so much more
Than our mistakes

That we are often more kind and caring
That accepting anothers' flaws
Can help us accept our own.

To forgive
Is to remember

That the odds are pretty good that
We might soon need to be forgiven ourselves.

That life sometimes gives us more
Than we can handle gracefully.

To forgive
Is to remember

That we have room in our hearts to
Begin again

And again,

And again.

Friday, October 2, 2009

Noah "kickin it" with Beyonce

This is hilarious. Noah loves the song "Put a ring on it" by Beyonce. I put the video from you tube up and he doesn't take his eyes off the screen. Then he signs "more" or "on" when it's over. Here he is hanging out with Beyonce.