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 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.
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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.

4 comments:

Jessica mommy to Alex/ RTS said...

Wow! Beautiful!

marilynd65 said...

That was a beautiful and inspiring!

Angelica mom to JesusRTS said...

that is nice!=) makes you douple think when you get tired...

Kerri H said...

Thanks..I needed to hear that today..I guess one of THOSE days! Hugs to you guys!