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.

Monday, January 25, 2010

You Think I Need Thicker Skin? Or Do You Think I Am Weak?

Some people in my life have mentioned I need thicker skin. I'm not sure if these people quite get "my life". I am by no means asking for anyone to feel sorry for me because I don't. I love my son with all his challenges and strengths. If you are someone who thinks I need thicker skin please walk a day in my shoes. Once you have done that then you can assume you understand my life. I think over the past 3 years I have developed thicker skin. I have seen a lot, heard a lot and had to endure a lot. Try to cut through my skin. Answer these questions and see how thick your skin would be at this point.

Have you ever watched your child hooked up to monitors, IV's, breathing tubes, feeding tubes and laying helpless in the NICU?

Have you ever been walking down the street with your child who yes happens to have special needs and hear the word "retard" making fun of someone else?

Have you ever had to wait three years to see your child take his first steps?

Have you ever had to struggle to figure out what your child wants because he can't verbalize yet? At 3 years old?

Have you ever sat in a room with a stranger who tells you your child has some strange syndrome you have never heard of before?

Have you felt so alone because not one Dr or Therapist has ever heard of your child's diagnosis?

Have you watched your child go through several surgeries?

My skin is thick enough and I'm strong. I won't give up. I won't back down. And I'm not going to let anything break me...


marilynd65 said...

Oh, you definitely have THICK SKIN and you are one of the strongest people I know....my daughter! You have been there always for Noah, Nick, and Tommy!

angie said...

You are strong! Your skin is the perfect combination....thick enough to stand up for what you believe in, but soft and smooth still when you need to be kind-hearted and love your family through every situation:). No one will understand unless they have been there. I HAVE been there, and I will tell you that I don't think that any of us want our skin to get too thick...think about that leathery look....who wants that??? LOL!! No, but seriously...if our skin gets too thick we lose the true vision of how beautiful our lives are.

Brandi said...

Angie put it beautifully.

In addition, just because you share your raw feelings does not mean you are a weak person, it actually means you are strong enough to admit how things really are. So many people walk around with their experiences inside and lead on as if they have "thick" skin when in actuality their skin is "thinner" than average.

Stay the course. Keep the skin you have and strive to add a few layers when necessary and shed a few to stay balanced.

Hugs to you my friend.

Kerri H said...

You go girl...I love your skin the way it is..I've been told I need to get thicker skin...I love you just the way you are...an awesome mom! Hugs!

Toots said...

You live your emotions in the present moment. You experience them and then release them. How many people can do that? It's far easier to bury feelings, to put blinders up, to wear thick skin than it is to experience life as it is--the painful and the beauitful. But to do so...it's called being alive, being fully alive.

As your sister, I've witnessed everything you've referenced. And, let me tell you, the skin you're wearing isn't too thick or thing. It's simply beautiful. As a new mom, I understand so much more, and you and Noah have been everpresent in my thoughts and heart on my own journey, every step of the way. I can only hope to be half the mom you've been to Noah. You are remarkable. Wear that skin with pride!!!

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