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.
Friday, July 9, 2010
How Do You Deal With It?
I have been doing a lot of thinking lately about Noah's Speech or lack thereof. I have been trying to be true to myself and my feelings. Some days I don't even think about it and the thought that Noah may be nonverbal doesn't sting as much. But other days it tears my heart in two. I really don't share these feelings with many people and I was hesitant to write about them. But this is my blog where I can release any feelings negative or positive. I love with a capital L the fact that Noah is signing and getting his wants across. I love the fact that he can use pictures, a device or whatever to communicate but that doesn't compare to hearing his sweet voice. I am grateful that he says "ma ma" and I'm even more grateful that he has the ability to understand sign and other forms of communication but sometimes it doesn't feel like enough. The unknown is what gets to me. If I knew one way or another if he was going to talk I could just accept it. But the not knowing is so hard. I still don't think any parent should have to sit and wonder if their precious child will ever talk or walk? I hate it if I'm being honest. But then I feel guilty complaining because I know there are children and parents that are in a much harder place. I should just be grateful but it's still not fair. If you know what I'm feeling, I'm curious to know how you feel? How do you deal with it in your mind? The unknown? I do feel that I have long accepted the chance that Noah may be non verbal but it doesn't mean I have to be in love with the idea. But I know acceptance is vital to me. I would love to hear any thoughts.