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, January 31, 2011

From My First Breath.

From my first breath you have loved me. You have loved me every second,of every day, for my whole life. Is there another love so strong? A love that grows even stronger when the rain falls. And then even more when a rainbow follows. There is no greater love. A Mother's love.

I look into the mirror and see my older self. I think of all the years that have gone by. It seems like just yesterday I was a little girl watching you put on your makeup. Thinking how beautiful you looked and watching with awe. It is now another lifetime. I only hope you know how much I love you. Your heart is beautiful. I am thankful for the compassion you have passed down to me. Thank you for loving me every second of my life. Thank you for holding my hand. I love you Mom.

Monday, January 24, 2011

Sometimes It Just Plain Hurts!

It's time for some honesty 101 on my blog. So, If you are feeling ever so cheery today you might just want to close out of my blog. I'm inspired to write these feelings I'm having because I just can't shake them. Yesterday a good friend of mine (who happens to have a child with RTS) emailed about her daughters B day wish list. One of her wishes was to not be "different" and to not have the symptoms of RTS inside of her. Can I just say that ripped my heart in two. This beautiful little girl wishes she could be like everyone else. This same little girl who has my son's syndrome. It made me so incredibly sad. It made me look into the future and wonder. Will Noah know he is "different"? Will Noah secretly cry and wish he was like everyone else? Would it be easier if Noah didn't realize he was "different"? As I'm writing this my heart is breaking again. It is so incredibly hard as a mom to imagine the challenges my son may face ahead. If you are a mom you can understand the pain I'm speaking of. The pain that hurts like nothing else you have ever experienced. The pain that your child may not be accepted or may feel isolated. Yes, I know I sound incredibly negative but my blog is my way out. I can't pretend that being a mom to a child with challenges is a bowl of cherries all the time. Sometimes it's hard. Sometimes it feels like a up hill battle. Sometimes I cry until I feel nothing at all anymore. That is reality. That is my truth. Other days are better. Most days are easy. Then there is today..My heart goes out to you my friend and Noah's RTS sister.

Monday, January 10, 2011

It's About TIme Mom!!!

Finally I got my "big boy" bed. It's about time Mom and Dad. I love it. Last night was my first night in my bed and I wasn't scared at all. I'm so proud of my bed. I even let Nicholas sit on it for awhile. I think he's a little jealous though. But, soon he will be ready for a cool new bed too. I told him how awesome it is to sleep in a car. He told me that he thinks it would be cooler to sleep in a fire truck bed. It's all the same to me. At least I'm in a cool bed.. Hope you like the pictures.

Love, Noah


Tuesday, January 4, 2011

A White Christmas.

Nope not in Florida. The whole family drove to WV to see my sister and her family. It was a long drive with Noah and Nick. They actually are pro's since we drove to Ohio for the RTS conference. It was truly amazing to see how my two boys reacted to the snow. Nick is the toddler with no fear literally. And Noah likes to hang out in familiar territory where it's warm inside. In other words Nicholas and Dad hung out in the snow and went sledding. And Noah and I relaxed by the fire and watched movies. It was freezing for this Florida girl. This was the first Christmas I think Noah really gave a hoot about. He was in love with the tree and loved hearing me sing Christmas songs. Nicholas equally loved the tree and was even more excited to pull off the ornaments. Both kids got some awesome gifts but their favorite was a electric toy train and a play kitchen. It still hasn't kept them out of the real kitchen though. We had a beautiful, funny, warm and also cold Christmas. Thank you to Heather, Micheal, Hannah, Seth and Adyen for having us. Here are some pictures from the visit.