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, December 2, 2009

Will He Or Won't He?

I have so many different feelings on different days when it comes to Noah's speech. Some days it cuts like a knife that he is not yet saying words (he does say "mom mom" all the time and said "bye bye") But other days it is just a part of who Noah is. I remember how naive I was when Noah was first diagnosed. I remember thinking if I had anything to do with it Noah would talk and he would not be "that" delayed.. I remember reading of children with RTS who were non verbal and thinking to myself that will never happen to Noah. I have learned so much in the past three years. I have come a long way. The fact is I don't know if Noah will talk or not. As a parent this is so hard to accept and even imagine but I've had to. I have learned a lot of "sign" and have taught my son to "sign" something I never thought I would have to do. I have taught my son to use pictures to choose whatever he desires. I never even knew this form of communication existed before Noah. I have read about all kinds of different communication devices. I have had to accept whatever the future holds for us. I hope with all my heart that I will hear Noah say "I love you mom" but I guess he already has. He has said it with his smiles, laughter, hugs and kisses. I hope soon he will sign "I love you". I say and sign it to him every night. I will never stop hoping and praying.


Angelica mom to JesusRTS said...

You almost brought me to tears, i know jesus is still little but i dont know what his futare holds for him. i will pray that some day we both hear/see our sons telling or signing to us that they love us but you are right just with his smile he is showing you he loves you! :)

Toots said...

Tears on a Thursday morning. Kristi, Noah loves you so very much. Anyone who's ever been around you and Noah can clearly see that. But I will pray for the day that you hope for, whether it be Noah signing "I love you," or saying it. Just know in your heart that he does. Sometimes actions really do speak louder than words. Relish those kisses and his sweet smiles towards you. He's certainly showing you how much he loves you.

Kelly said...

I will be hoping and praying right along side of you! Speech and feeding our my biggest struggles with RTS right now. I think speech is so hard because Max gets so frustrated when he can't tell us what he wants. He is picking up lots of signs that I am greatful for. Kelly F

marilynd65 said...

My darling Kristi, my eyes filled with tears also. I have been around you and Noah many times and sometimes for a month at a time. I saw how Noah interacted with you with so much love. There is no doubt in my mind that your son adores you! He will either speak or sign "I love you, Momma" in "Noah's time" as you and I always say. Love you so much, Mom

Kerri H said...

I hear ya girl..I worry and go back forth on this issue all the time! I am waiting to hear those words to..Prayers for speech for all our kids! Hugs! Hope you're doing well! Logan says to tell Noah hi!

Recovering Noah said...

Hi, I just found your blog. I wanted to tell you how much I'm enjoying it. I really enjoy your honesty.

Also, my son Noah is completely nonverbal, but yesterday he said "I love you, Mom" for the first time. He has only recently started babbling and he's 8 years old. While I don't know if he'll ever say it again, it was the best day of my life.

Never quit believing in miracles.

Leslie :-)