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 24, 2011

Sometimes It Just Plain Hurts!

It's time for some honesty 101 on my blog. So, If you are feeling ever so cheery today you might just want to close out of my blog. I'm inspired to write these feelings I'm having because I just can't shake them. Yesterday a good friend of mine (who happens to have a child with RTS) emailed about her daughters B day wish list. One of her wishes was to not be "different" and to not have the symptoms of RTS inside of her. Can I just say that ripped my heart in two. This beautiful little girl wishes she could be like everyone else. This same little girl who has my son's syndrome. It made me so incredibly sad. It made me look into the future and wonder. Will Noah know he is "different"? Will Noah secretly cry and wish he was like everyone else? Would it be easier if Noah didn't realize he was "different"? As I'm writing this my heart is breaking again. It is so incredibly hard as a mom to imagine the challenges my son may face ahead. If you are a mom you can understand the pain I'm speaking of. The pain that hurts like nothing else you have ever experienced. The pain that your child may not be accepted or may feel isolated. Yes, I know I sound incredibly negative but my blog is my way out. I can't pretend that being a mom to a child with challenges is a bowl of cherries all the time. Sometimes it's hard. Sometimes it feels like a up hill battle. Sometimes I cry until I feel nothing at all anymore. That is reality. That is my truth. Other days are better. Most days are easy. Then there is today..My heart goes out to you my friend and Noah's RTS sister.

9 comments:

Nicky said...

Hey Kristi - well, after my little rant a coupla days ago, you know that I know how you're feeling :) It most certainly is no bowl of cherries all the time...that's why I so cherish "good days". I am a natural-born worrier so stressing about what lies ahead in Sam's future is probably one of my biggest challenges and I have to watch myself carefully that I don't let it completely overshadow enjoying him now. Thinking of you, heaps o' hugs xxx

Toots said...

If Noah ever has these moments you reference, I believe the love you've provided him will always prevail. The love you and Tommy have showered upon him will translate into how he feels about himself. And I believe that has to win out over everything else. There will always be people in this world that fear, and in turn, hurt others. But Noah, as he is now, is such a shining example of pure love. I can only hope that if he has those moments, he remembers all the people who have loved him so dearly since his birth, and his fears will subside. We love you Noah! And we love you, Kristi! You're a terrific mom. Hang in there!

Jacqui said...

I know what you mean. I also felt an icy shiver over my heart as I read about the birthday wish. It is hard. There is no way around it. It is hard. Don't have an answer, but know you are not alone. Sending you hugs.

marilynd65 said...

My Cricket, you and I both understand these feelings that you just shared. It is normal to have these feelings and concerns. At the time of Noah's birth, I worried about what challenges my daughter and grandson would be facing in the years to come. Let's face it, there are ignorant, insensitive, and mean spirited people in this world. I feel that Mr. Noah is a very happy boy because of all the tremendous love, care, and support that you and Tommy have shown him! With all of that love surrounding him, I am confident that he will be able to face any hurtful words or actions. Cricket you are a very special mom and Noah is a special sweet boy. I am proud to say he is a little star in his school. I love you and Noah very much.

drurylove said...

I am sorry that I have not been on the blog lately, but something told me earlier that I should go to your page. My computer was down and I was unable to view it. I tried to call you an hour ago. I sensed there was something wrong. I wish I could just give you a hug. Sometimes a hug is so much more powerful than words. I know that life is not always a bowl of cherries. Noah is my angel. I look at his pictures on the wall and I know that I have never seen a soul so pure or content. HE is so very loved by so many people. He has been a blessing in my life. I don't know if I have taught him much (other than Johnny Cash songs) but he has taught me so much about everything. The world we live in, the beauty that we find in other people.. the list could go on. I love both of you beyond words. You are only human, there is no need to pretend. Sometimes you have to take off the mask that we speak of often. You, my beautiful sister have taught me important life lessons that I will carry in my heart forever.

Jessica mommy to Alex/ RTS said...

Im going to tell Alex that we are all different. No one is the same. He IS like everyone else because we are all different.

Cindy said...

What Jessica said.

Kristi said...
This comment has been removed by the author.
marilynd65 said...

I really liked what Jessica said.