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.
Thursday, August 27, 2009
I am dreading tomorrow morning horribly. Tomorrow starts the evaluations for Noah with the public school system. I have not made any decisions regarding his schooling right now. I am going to wait and see how everything turns out at the evals and IEP meeting. I have a lot of anxiety where this is concerned. So if you pray please pray for us.. Sorry this is quick but I have two crying kids right now.
Tuesday, August 25, 2009
Is it just me or does Noah look like such a big boy in these pictures? Noah has found a favorite hobby. If I let him he would just open and close doors all day long. He is finally tall enough to reach the door handle and figured out how to open it. He finds his new pastime hysterically funny. He laughs so hard that I would swear the neighbors could hear him. I also forgot to post what happened when we went to Noah's Dr appt last week. Noah and I were walking toward the elevators (Noah is obsessed with elevators) when he decided to let go of my hand and take a few steps by himself. He really wanted to get to that elevator. When he realized that he let go, his arms went flying up in the air. It was only a few steps but I was really excited. Pray for my boy that he will walk soon.
Monday, August 24, 2009
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.
Tuesday, August 18, 2009
Hey Guys it's me Noah. I just wanted to write about all the cool stuff I can do now. It makes my mommy feel better with all these evaluations for me coming up. My most favorite thing to do is puzzles and point to pictures in my books. There isn't a puzzle you put in front of me that I don't try to finish. Don't mean to brag but I rock at puzzles. I babble a lot but I like to say "ma ma" the most. I always see mommy smile a lot when I say that. I am starting to understand this whole "signing" thing now since mommy got me the "signing times" dvds. I like to sign "more" for "yes" and "more" but I'm trying to work it out. The other day I signed "eat" and "dog". (I was watching the movie when I signed "dog". Mommy and Daddy can usually understand what I want because I am now pointing to everything. I can scoop my own food by myself and I'm started to use my fork too. I climb on and off furniture and I'm trying really hard to be brave enough to walk without a hand or finger. I can pick out the right shapes when I am asked. I know triangle, square, circle, oval, rectangle. Oh and I am learning how to color. I pick the right answer to all of my flash cards too. Mommy always tells me how smart I am and I feel so proud of myself. I am learning my colors now too. Well there is so much more but I don't want to brag too much about myself. Peace out everyone, Love, Noah.
Saturday, August 15, 2009
This morning Noah and Nick were watching Baby Einstein together. It was so cute to see them both in front of the t.v sitting side by side, eyes glued. I stood in the doorway watching them and felt so thankful that they had each other. Noah does this kind of weird thing with Nick's hands. I'm not quite sure what he is trying to do but it looks like he is massaging them. He does it to his feet too. I caught a picture while they were watching the movie of Noah doing the "hand thing". That's what Tommy and I call it because we can't figure out what he is doing... ha ha. It is so cute though.
Thursday, August 13, 2009
Today was Nick's 2 month check up. He is 24 inches tall 90% percentile for height and weighs just over 12 pounds. He is smiling, cooing, holding his head up, and looking from side to side. The Dr put him on his belly and he pushed right up with his hands. He looks so strong. The Dr even said he was ahead for his age. Ahead?? That is a new term for me. I am used to hearing delayed, might catch up, work on this etc... The Dr then said it will be great when Nick starts to teach Noah things. For some reason that made my heart drop. Why I don't know? I think because it should be the other way around. Noah is the big brother and he is supposed to be teaching Nick things. I know in my heart of hearts that its a great thing that Noah will learn from his brother but it still hurts me. It hurts knowing that Noah has to struggle with so much. That is why I had mixed emotions I think. I am very happy that Nick is doing so great but at the same time sad that Noah still has to work hard at everything. I also know that Noah will teach Nick a lot too. He will teach him how to be patient, kind and understanding. He will teach him to embrace differences and be accepting of diversity. He will show him how to not take the beauty of the world for granted. To be joyful of even the smaller things in life. I guess I have already made myself feel better by writing this . I am blessed to have both of these little angels in my life.
Wednesday, August 12, 2009
My sister and Noah have a special bond. A bond that is undeniable. One that can't be broken. I lover her so much for loving my son so much. A few days ago my sister Angie sent Noah a musical card. He opened it up and it was all over. Every day I hear that card over and over. He takes it to his highchair for meals. He took it in his car seat to therapy. He crawls around the house with it in his mouth. He actually took a bite out of it the other day. It seems that Noah must know Angie sent the card to him. He has bonded with that card over the last few days. It looks like this will also be a bond that can't be broken. We love you sister.
Thursday, August 6, 2009
Noah has a friend named Addie who also has RTS. Her awesome Dad is running 26.2 miles to raise money for the Special Friends Foundation. This foundation has helped families affected with RTS in so many ways. If you would like to read more about it click on the link at the top of my blog. I would just like to say thank you to Addie's Dad for doing this for our children. It means a lot..