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.

Tuesday, July 28, 2009

One More Step Forward





Walking... This is what is keeping me up at night. I know I shouldn't be beating myself up about it but I am. Yes, I know, he will do it when he is ready. I have even been bold enough to give that advice myself . It is so hard to accept my own advice sometimes. Just the other night I was sitting on the couch telling my husband that I feel like I have failed. Why can't I learn to accept that I can't control this?? Still, I can't control my fear and anxiety where this is concerned. But here we are in the moment trying to find hope. Trying to keep holding on knowing that one day soon Noah will walk. I have said to myself that it is a hard thing to be a mom and have to pray every night that your child will walk and talk. But then I read other blogs of mom's whose children will never walk and that forces me to put things in perspective. My little man is taking small steps forward. I know that he will make it soon. He is the biggest fighter I know.

10 comments:

Brandi said...

Those are awesome pictures! It looks like he is walking...is he? The last one cracks me up. "Phew Mommy, am I done yet?", is what it looks like he's saying.

Kristi said...

He is walking with the gait trainer and holding onto one hand but he won't let go yet..

Terri H-E said...

Kristi - ya worry, can't help it. Part of being a mom. But I can also see that you're not letting the small victories slip by unnoticed. You don't have tunnel vision regarding the big goals: talk, walk, etc. I can tell by what you photograph, what you post.

THAT is what matters. The more Noah sees you value the little things he masters,the more intitiative he may take on his own to make more happen.

You are a remarkable mother. You are exposing him to all kinds of options, you are trusting him to take up what he can when he can and you are celebrating when he does. Sounds like you are doing everything right to me.

It's not really in your hands, it's in Noah's. Trust him.

Cheers to you, mama.

Jessica mommy to Alex/ RTS said...

Terri always says it best! You are not letting those small victories go unnoticed, and that makes such a difference!
Great job Noah!

Toots said...

Noah, I'm so proud of you! You are out there in the heat working it. My face lit up when I saw these photos. Keep it up! Everyone loves you and knows you can do it, and will, when your little heart feels the overwhelming need.

Trust in that, Kristi. You're a great mom. You know that. If you could fly to the moon and pull down each and every star for Noah, you know you'd do it.

You are so blessed to have the support system you do on this blog.

Cindy said...

Here's YOUR brilliant advice, back at you: He will do it when he's ready. ;)

And a year later, it will be a hazy memory for you how long it took for him to walk. He's going to do it, Kristi!

angie said...

I'm right there worrying with you Kristi...it does get easier, but some days it's just HARD! You are doing a FANTASTIC job!!! Hang in there:).

Kelly said...

The last picture is priceless! He is doing great. Kelly F

marilynd65 said...

Kristi, You have worked very hard with Noah and have done a fantastic job! I have seen Noah's accomplishment first hand many times!! I have never seen such DEDICATION!!!

marilynd65 said...

Noah looks like he is standing tall and proud!!!