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.

Sunday, October 9, 2011

Reflections.

In a few days it will five years ago the friendly Dr told me Noah had Rubinstein Taybi Syndrome. Five years but it almost seems like yesterday. So much can change in five years. Dreams, perspective, hope, determination, strength, and peace. Those are just a few of the words that pop into my head when I think about myself,the different things that have changed me over the years. After hearing the words Rubinstein Taybi Syndrome I thought my life was over. I wish I would have known that it was the beginning of something more beautiful than I ever imagined. The beginning of a little boy's life that would change me forever. That would make my heart that much happier. I didn't know he would make me see the world so differently. I didn't know he would make me even more compassionate than I already was. Noah has given me so many gifts. Yes, there are challenges but the success of beating those challenges is more powerful. The determination I have seen in Noah's eyes as he faces his challenges humbles me. Five years ago I had no hope. Today hope is what keeps me going. Most importantly, five years ago I thought I would never feel peace again. But, I have never been so wrong. Peace is all around me and I am so blessed. I still wish I could be who I am today and comfort my old self. I wish I could tell myself then all I know today. I wish I could sit and hold my old self's hand and give her my present strength. But, instead I will take the strength within me now and run with it. Thank you Noah. I love you more than the sun, moon and stars. Happy almost birthday..

Friday, September 23, 2011

Hear Me. I can communicate with you.


Yup it's been a very long time. I've missed you blog but for some reason deserted you for 6 months. I kept telling myself that when I felt really inspired or in this case really pissed about something, I would write. The next part of my entry will be from what I know Noah would say if he could.

Dear Idiots, who don't know me and want to judge me because I don't speak with my mouth. My name is Noah. I'm almost 5 years old. I know so much more than what some of you give me credit for. Yes, I'm unable to talk right now with the spoken word but I communicate. I speak with my hands and most of all I speak with my I pad. I create sentences. I let those who believe in me know what I'm feeling and what I want to do. Yes, I do feel just like you. I know exactly what I want and how to ask for it. I understand what you are saying to me. Don't underestimate my understanding. Don't assume I won't understand until you challenge me. My mommy and daddy believe in me so I know I can do anything I want to do. So, to those of you that think you know what I can't do...Open up your eyes because I can and I will.

Friday, March 11, 2011

I Can't Imagine

Recently I read about a mom dealing with a specific physical problem with her daughter. In the post I read she wrote "at least she doesn't have a cognitive disability, I don't know how they do it?" "They" meaning me because my son has a cognitive disability. This is how I do it. I get up every morning, make my son breakfast, get him dressed, take him to school. Pick him up from school, love on him, read to him, feed him, play with him. I take him on walks, we pick grapefruits, he climbs up his tree house and plays with his little brother. He speaks with his hands and is a genius on his I pad. I tuck him into bed and I take care of him when he is sick. I tell him I love him a million times. I tuck him into bed and he kisses me goodnight. That is how I do it. Kind of like you. Our life does have extra challenges but we live just like you do. And we love just like you do. This is how I do it and I wouldn't change him for the world.

Saturday, March 5, 2011

Oh Nicholas!!!

It's been a while I know. I have been so not in the blogging mood lately. But, I'm back. This is how I found Nicholas recently. This sweet boy needs to get out more. A pine cone, paper towels, and a basket. Hmmm????



Wednesday, February 2, 2011

Noah Being A Kid



I forgot I had this video. This is Noah with his cousin Seth in a pit of corn. When my family visited back in October, we took everyone to a huge farm for the day. Noah enjoyed most of his time in this pit of corn. Noah is a total sensory kid. He loves to feel anything in his hands. He craves any kind of tactile stimulation so this was the perfect activity for him. And Seth is being such a awesome big cousin.

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



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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.
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