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, December 5, 2010

My Own Special Christmas Tree.

Last night Tom and I decorated our Christmas Tree. But as I was hanging the ornaments, I realized the tree symbolized something more than the usual warm, fuzzy feelings. This is the first year we have put a tree up in our house in years. Every year we have gone to N.Y for Christmas and don't bother putting one up. I thought the last tree we had in our house was four years ago. It was the Christmas after Noah was born and diagnosed with RTS. He was fresh out of the NICU that year we had a tree. My mom was still in Florida helping me. I was still a mess and full of fear that controlled almost every thought. I remember her helping us pick a tree out and then decorating it. I did not decorate the tree that year. I watched in a state of numbness as my mom decorated it beautifully. I did not feel joy and I certainly wasn't in the Christmas spirit. My wounds were very fresh and I didn't know if I would ever feel that "Christmas Joy" again. Wow!!! Last night I realized with each ornament hung that it represented strength. Each ornament was just a little piece of me throughout the last four years. When we finished the tree I teared up. I wish four years ago I had known that the joy would return. And when it did it would be even more powerful than ever. Our Christmas tree symbolizes how far our family has come.

6 comments:

Jacqui said...

Kristi what a joyous realisation. If only we could bottle that revelation and share the fullness of it with other parents when they receive a diagnosis of their child. You have really come so far. I wonder what revelation you will have in 4 years time?? What amazing things will you be celebrating then in Noah's life, in your life?

Toots said...

So powerful! I am so happy for you! How wonderful thatyou're celebrating your first true Christmas as a family in your own home with your special Christmas tree and all the trimmings. Love and kisses to you all!

Jessica mommy to Alex/ RTS said...

Love this!

Cindy said...

What a great post! I love it when we remember where we were and see how far we've come. Merry Christmas!

Angelica mom to JesusRTS said...

I love how far you have come! thank you for sharing this with us!

marilynd65 said...

Kristi, what a beautiful entry to your blog!! You, Tommy, and myself were so scared...those feelings seem so distant now. I know how it was back then and how far you and Noah have come. Noah has such a busy and full life now at a school he loves with teachers who adore him. You are still his #1 teacher! People are not going to understand this question that you and I laugh about together (WHERE'S NOAH?) I am so proud of my awesome daughter and of Mr. Noah.