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, August 24, 2009

Choose Hope Over Fear.

For me raising a child with special needs allows fear to creep into my thoughts on a regular basis. I feel like all the "what ifs" can be very overwhelming at times. I remember when Noah was first diagnosed how fearful of RTS I was. I didn't want to look at any pictures of other kids with RTS. I didn't want to even talk about it with any of my family members. I was petrified to join the list serv that my husband had already joined. I was fearful. I chose fear. Lately I have been up almost every night worrying about Noah not walking independently yet. Worrying about whether or not I will hear him talk to me one day. Worrying about school and evaluations. I chose fear. But today I have decided I will choose hope instead of fear. Today I understood Noah. It may seem small to some people but to me it is huge. Noah is pointing and gesturing to everything he wants or needs. He is using his pictures to tell me what he wants to drink and eat. Even though my sweet baby can't say words yet I understood. Today I will hope. Today I will embrace the small things in life. Today I will let go of fear.


Jacqui said...

Reading your post reminded me of this verse.

Romans 5: 1- 5
"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."

I have found that choosing hope is often a daily choice - so I pray taht God will strengthen your spirit to choose hope every day!

Myssie said...

Way to go Kristi! It is an awesome feeling to take charge of your life and to leave living in fear behind. I am proud of you.

Toots said...

I know you will know what I'm saying when I tell you Dusty would be proud. It's the lesson she ultimately learned. Living in hope feels so much better in your heart, your spirit, your soul, than does living in fear. You go girl!

Jessica mommy to Alex/ RTS said...

Ill choose hope with you!

Brandi said...

I am going to print this post and read it every day until hope overpowers fear in my mind as well. You brought me to tears.

I just read your post from a few days ago about all of the things that Noah can do. AMAZING Kristi! It just goes to show how much work you have put in to him. He has more skills then half of the first graders I get at the beginning of the school year. Keep up the good work.

Cindy said...

Yeah Kristi! Today is a great day, and hard days like yesterday will come again, but if we keep rejoicing in what our kids CAN do and not worrying about what they can't do, life will be better.

And as Jacqui quoted, every hard thing we go through produces fruit.


Kerri H said...

Beautiful post Kristi and well put! Here's to more days ahead that are full of hope..it does make living each day easier! Hugs!