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.

Wednesday, September 10, 2008

I Wish I Had Known.

Anyone who is close to me knows how hard it was for me when Noah was first diagnosed. So I decided to blog about what I had wish I'd known almost 2 years ago.

I wish I had known
How strong you have made me feel
How your smile could brighten a cloudy, rainy day
How your eyes tell a story of strength and undeniable beauty
How much you love to dance
How you love to read books
How you love to listen to music
How easy it is to make you laugh
How you bring so much joy to my heart when you call me "ma ma"
How you love bath time
How you could be happy playing with your ball all day long
How you have shown more courage in your little life than I can imagine
How cute your little mouth and feet are.. Especially your crooked little thumbs
How much you love cereal bars.. Ha Ha
How you like to hug Rocky and pull on his ears
How comforting your hugs are to me
How you love when I sing you to sleep
How you are the most beautiful, funny, extraordinary person in my life

I love you Noah more than the sun, moon and stars.
Love, Ma Ma..


Jessica mommy to Alex/ RTS said...

I spent so much time worrying that thre was something wrong with Alex when I was pregnant. I too wish I had known what joys awaited me, if I would just sit back and see them.Im there now though. do I dare say excited about whats to come?!?!?!

Toots said...
This comment has been removed by the author.
Toots said...

Oh me girl...you just made me cry! That was real beautiful now, real beautiful. :-)

Jacqui said...




It is SO good to focus on the blessings.

Thank you - I really needed to read that tonight.

Nana said...

Kristi, BEAUTIFUL...I read this everday!!! Noah is truly in the arms of an angel, you, my darling Kristi.

Love you, Mom