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.

Sunday, March 15, 2009

HEART WRENCHING

That is the way it feels sometimes when raising a child with special needs. I don't mean to complain and not be grateful for the things I have but sometimes that is exactly how it feels "heart wrenching." Today we were at the park and it hit me just how "not so typical" Noah is. Don't get me wrong, I would not change Noah for anything but he is for sure not like most 2 year olds. I caught myself sitting on a bench watching all the kids running around, climbing slides, playing with sand buckets and I felt sad. I know Noah will get to that point sometime soon but for some reason I felt jealousy watching all the parents and their "typically so called perfect kids". I hated myself for feeling this way. I thought I was beyond all these feelings but I guess they creep out every so often. I am also dealing with some anxiety where Noah is concerned lately. When I was at the MW reunion I saw kids Noah's age with RTS walking and it was so difficult. I keep wondering when that big moment will be for Noah?? I know it will eventually come but when? Thank God for this blog because I can get everything out... Tomorrow is a new day.....

7 comments:

Brandi said...

Kristi,

I hear your words, I feel your heart felt pain. It is so hard not to compare, it is so hard to take it "day by day" at times. Yes, tomorrow is a new day. Sending you hugs!

Brandi

Kelly said...

That is one of the toughest parts of our journey. We love love our babies...but sometimes the sadness creeps in. Tomorrow will be better!

Kelly W.

Cindy said...

Hugs! It helps to encouraging each other during these down days. I know you encourage me when I'm having a hard day too.

Michelle said...

I know what you mean. I feel that way with Austin sometimes. He's completely non-verbal and it's so hard to see a lot of the RTS kids using signs and speaking a few words. Austin knows signs but refuses to use them or he forgets them. Frustrating, I know.

Jacqui said...

Kristi

I am so glad that you can express your feelings and thoughts honestly - a blog is so helpful for that. I have found when those thoughts stay couped up in your mind then they grow and become real monsters. Never stop sharing your heart - the celebrations and the sorroes. I know you know this - but you are not alone in this. Sending you HUGS

Jessica mommy to Alex/ RTS said...

I do it too, I see those kids, and it hurts, then I just look at my Alex and all the pain goes away. Wish i could have hugged you last weekend:)

Kelly said...

Heart Wrenching hits it on the head some days! It was great meeting you and your family in the Dells! Noah is adorable! Kelly f