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.

Friday, January 30, 2009

I Am Getting Frustrated.

Today I am feeling frustrated. This is so hard being pregnant and trying to get everything done that I should with Noah. I don't know what else to do to help Noah with his walking. I am going to be honest and say at this moment I feel like a failure. I thought for sure he would be walking by now and it makes me sad and frustrated at the same time. I keep thinking that I have not done enough these past months because I haven't felt well. I feel like I try and try and then try again. I am angry at all the mom's who get it so easy. One day they wake up and their one year old is walking..Then they complain about all the stuff they are getting into or that they are running off. I just want to scream to all these mom's to be thankful that you don't have to bust your butt to see it happen. Then they complain and say they wish their little one would stop talking so much that it is annoying. God how I wish I could hear Noah talk too much. Today is just one of those days that I feel overwhelmed and a little bit annoyed with life. But in the end I am grateful for what I have just tired and don't know what else to do anymore.

Wednesday, January 28, 2009

I Am Grateful


Last Sunday evening a sweet girl named Bella passed away. Bella had RTS and would have turned 2 years old in February. Please pray for her family in their time of grief. The passing of Bella inspired me to write these feelings.

I am grateful for the way you hold my hand over your face why you fall asleep in my arms. I love that you don't want to let go. You hold my hand so tight.

I am grateful to hear you cry in the middle of the night. I know that you need me but you are ok.

I am grateful for your laughter, beautiful smile and the way you're blue eyes sparkle when you are happy.

I am grateful for all the sounds you make. You are trying so hard and I am proud. I love when you say mama, nothing else matters in that moment and my heart rejoices.

I am grateful when you wake up. I hold you close and listen to you breathe. Another day has begun and life is beautiful because of you.

I am grateful that you will be able to walk and you are almost there. Remember slow sometimes is fast enough. We will cry, laugh and celebrate when we are blessed to see you walk.

I am grateful to take you to 5 therapies a week. I know that you are thriving and this feeling comforts me.

I am grateful for your health. I pray every night that you will stay healthy and happy.

I am truly grateful to be your mom. You complete me and I love you forever. Every day I will thank God for bringing you into our world. When I became your mom, I experienced a love I have never known. You are so loved Noah.. My little prince...

Remembering Sweet Bella...

Tuesday, January 27, 2009

Noah in NY






This post is very delayed but I wanted to share some pictures of our trip to NY. Noah Tom and I went to NY for Christmas this year and it was Noah's first snow experience. We took his sledding for the first time and to say the least he wasn't impressed. There is also a picture of all of us at Trophy point in West Point, NY. This is where Tom and I had our wedding pictures taken so it was fun to include Noah in them this time. We stood on the same wall that I stood on our wedding day. But this time we stood there as a family of three awaiting the fourth. Noah and I stayed longer than Tom (about 10 days) so we were able to spend a lot of time with my Mom and Pop. Noah's Aunt and Godmother came to visit us while we were there too. She has a lot of great pictures of Noah which I plan on posting soon. For some reason they won't upload to my computer. We had a lot of fun while we were there. We miss you Mom, Pop and Angie. Thank you for spending so much time with us.

Monday, January 19, 2009

Noah is going to have a brother!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ok I know in my last post I said I was going to get better at this blogging thing. I lied. I have just been really busy trying to get back into the swing of things since our vacation. We have been home a little over a week and all of a sudden it feels like we never left. Back to therapy, Dr appts etc.. My level 2 sonogram was last Monday. I wanted to announce my news that Noah will have a little brother. Yes its a boy. I thought for sure we were having a girl but I am happy just the same. The Dr said all the baby's organs and measurements were normal so far. He even looked at his hands and thumbs and said they were beautiful hands.. I was so nervous laying on the sonogram table that I had a couple of contractions. I didn't even want to move or breathe. It brought back a lot of memories of the sonograms I had when I was pregnant with Noah. Every sonogram I had the DR found something that just wasn't quite right. For a few minutes the pain flooded back that I felt over 2 years ago. Knowing that there was something wrong with my baby but not knowing what. I couldn't wait to get home to Noah and just give him a hug after that. I have another sonogram when I turn 24 weeks to recheck the measurements and the heart. I will also have a echocardiogram just to be safe. This is all precaution when we hit the 35 mark.. Yippee.. Later when I am not so tired I will post pictures of our trip... Right now Noah is throwing a temper tantrum because I am sitting in his spinning chair. Pardon me dear prince... Recheck the blog for pictures ...