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.
Wednesday, March 25, 2009
I caught Noah in his room playing with his sit and spin the other day. Only thing is, I didn't realize he had a friend with him. Noah got the bear you see in the pictures from his Aunt Angie. We call it the "Auntie Angie Bear". The bear sings Noah a song and he adores it. I guess he figured the bear needed a ride on his sit and spin too. It was the cutest thing I have ever seen..
Tuesday, March 17, 2009
Dear Mom and Nana,
There is so much to say to you on this very special day. I don't even know where to start. From the moment Noah came into my life, I knew what it was like to unconditionally love my own child. A love that you have known for over 40 years. You have given everything inside of you for all of your children. For that among many other things I admire you. On your birthday and everyday you should be proud of all your accomplishments as a wonderful mom. You have always been there for me but especially these past three years. You have held my hand, wiped away my tears and stayed strong when I couldn't be. You stood by my side on some of the hardest days of my life. When I felt like I couldn't go on, there you were lifting me up on my feet again. Noah will never forget how you didn't leave him either. Everyday he was in the nicu there you were sitting by his bedside with me. He will never forget and neither will I. Live everyday knowing you have made a difference in my life and Noah's life. I wouldn't be the mom I am today without the strength and love you have passed down to me. I am so grateful.. We love you. Love, Cricky and Noah.
Sunday, March 15, 2009
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.....
Thursday, March 12, 2009
This past weekend Tom, Noah and I went to Wisconsin Dells to meet some new friends. It was one of the best experiences I have ever had. To walk into a room and feel like you are truly with people who understand and "get" our every day life is just priceless. I felt so comfortable and so much at home over the weekend. I met so many children that reminded me so much of Noah. Noah played nicely and shared his toys with all the kids. His toys were a hit in the group room . We brought all his musical toys and it was apparent most of the kids loved music just like Noah. I'm going to post some pictures of the kids playing. There is one of Noah and Jessica who is 20 years old with RTS. She took a liking to Noah and wanted to have a couple of pictures of the two of them. The other pictures are of Noah and Christopher playing who is 3 with RTS. Lots of love this weekend.. Thank you to Terri who coordinated this whole thing. We are so blessed to be able to share in this experience.
Monday, March 2, 2009
Today Noah had water therapy. This is absolutely his most favorite time of the week. When I ask him if he wants to go to the pool he cocks his head to the side and smiles really big. Today Daddy got to meet us at therapy so that was really cool for Noah. He was showing off beyond belief today for his Dad. He stood all by himself in the water on a platform and he climbed up on a hard board all by himself. This is really hard in the water and takes a lot of balance. The biggest thrill of the day is that Noah said the word "ball". Noah and his therapist were playing ball and the ball rolled away, Noah then said "baaalll". His therapist and I both heard him. I really wish that we could do speech therapy in the pool because this is where Noah is the most verbal. Last week he said ma ma the whole 30 minutes he was in the pool. I am so proud of Noah and I really hope once he is walking his speech will progress. I just keep praying ..