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, May 26, 2010

This Part Is Getting Easier

When Noah was an infant, I dreaded anyone asking me questions about his diagnosis. I hated saying the words "Rubinstein Taybi Syndrome". I especially hated the syndrome part. It was so hard to answer when someone asked what it was. I never knew what to say. Sometimes I tried to make it sound like no big deal so people would stop asking questions. Today when I was waiting for Noah to come out of therapy, I realized how far I have come. (yes I'm going to give myself a pat on the back right now) I was talking to another mom about Noah. The words Rubinstein Taybi Syndrome didn't sting, they were just words. It was just a normal conversation explaining the different things Noah has to go through. It didn't bother me to explain to a perfect stranger that my son has a disability. It only bothered me a little when she asked "Is he going to talk." I swallowed kind of hard and just answered "I don't know but I'm giving him every opportunity there is to communicate." I was proud of myself this morning because I didn't hold back. I realized that the person I was a few years ago is gone. The person I am today has a lot more courage. I am grateful for that.

7 comments:

Nicky said...

Well done Kristi! I think the hardest part of explaining to someone that our children have RTS is that it is such a rare disorder, so whereas if it was say Down Syndrome (not saying that one is better than the other of course), which most people know about and, more importantly, know the conditions of it would not be necessary to go into detail, but with RTS we face the inevitable questions about neurological delays and, yes - the most heart-wrenching...whether they will talk. I've yet to find my "comfort" zone with explaining RTS - at first I would become too emotional and now I find myself going to the other extreme where I am just too smiley & bubbly while explaining the conditions, which leaves the other folks thinking I'm either extremely dillusional or on some kind of weird medication!

Jacqui said...

What a milestone for you to reach. I am also finding it easier to explain to people. Tho, I am still playing around with what words best describe RTS without denying that Matt is a person in his own right. I do find that moment when people ask his age to be tricky - as then it becomes obvious that Matt is "different". Do I explain or do I wait to be asked? Sometimes it works out and I have an amazing open conversation. Other times it is just awkward. It is a journey.

Kerri H said...

As Logan as turned 5..I too have found it easier...a little more comfortable..it does get easier this part..eventually I think we will all know what to say...for me though it ultimately depends on the person and my gut feeling on how much to say and the words I use..luckily though I haven't run into too many tough situations..yet..hugs!

Toots said...

You've come a long way in your journey. You are courageous and so, so beautiful. You impress me everyday. Love you!

marilynd65 said...

Kristi, I am so very proud of my beautiful daughter! I especially know that you have come a long way since we spent so much time together after Noah was born. I love you so much! Mom

Shayla said...

:) Amen!

What a blessing you must be as a mother!!!

Those boys are precious :)

Kelly said...

I am finding it easier too. It is interesting how I read your post and realize I am right by your side. . . I think it is because of our boys being only a month apart. Hugs! Kelly