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, February 24, 2010
Have you ever been in a random place and hear this question? "How do you do it?". And then "I don't think I would be able to handle it,if I were in your shoes." How come whenever some people (not all) find out you have a child with special needs they look at you with pity? Don't they think I notice the "Oh I feel sorry for you look." And then some people assume you are this special, great, chosen one, that can do no wrong. As a parent of a child with special needs this annoys me. I want to say to all the wondering minds that "I'm just like you." I get up in the morning and take care of my children the same way you do. I take each day at a time. We do normal things like reading, playing, singing, etc. Do the people who think they would not be able to handle "it" realize I thought the same thing in the beginning. I'm just like you. I am a mom who loves her children. And, if you are one of the people who looks on a parent with pity because of her special child, please don't, smile instead. We don't want your pity. We love our children just the way they are. I wouldn't change this beautiful child for the world.
Monday, February 22, 2010
Monday, February 15, 2010
I have been doing a lot of thinking regarding a post from a week or so ago. If you read the post it was regarding my skin being thick enough. I started thinking and I don't think I was truly honest with myself when I wrote that. I was annoyed with a couple of people and wrote that in a moment of scattered emotions. I came across as if I have this extremely thick skin that no one could break through. If I'm being honest that is so not me. I am proud to say that while I may not have the thickest skin, I do have compassion that runs deep for others. I am also proud to say that I cry when I feel sad. I don't mask my emotions and hide them deep within me. I don't pretend that everything is ok when it's not. If I feel like my strength is wearing thin I will show it. If someone hurts my feelings with a comment or harsh words, I will show my hurt. Instead of pretending to be this tough, thick skin wearing person, I am proud to say I'm not. I see the world with open eyes. I don't turn away and hide from the pain I feel. I express it and acknowledge my feelings. At least I know I'm living and feeling everything. I don't mask my emotions and for that I'm proud. Now I can feel that I've been totally honest. This post is really me.
Tuesday, February 9, 2010
Mr Noah has started Horse Therapy!!!! I have to say Noah is a natural on the horse. His first day I stood on the sidelines and watched him with tears in my eyes. He looked absolutely beautiful riding that horse around. His therapist even mentioned to me that she would need to challenge Noah a lot more than she expected. She asked me if Noah had ever been on a horse before.. The only horse he has been on is his toy horse at home. Yesterday was his second therapy session and he couldn't wait to get on his horse. He kept signing "on" until it was his turn to get on. These therapy sessions are so special to me for many reasons. When Noah was in the NICU someone sent me a email of a little girl with RTS receiving horse therapy. Each morning I woke up in the hospital hotel, I felt hopeless, sad and petrified. The email of this little girl helped get me through the first hours of the morning. I felt so much comfort and hope when I saw her on the horse. For just a while it made me feel that everything would be ok. Ever since then I have wanted to see my sweet boy on a horse. What a amazing feeling it was to see my baby looking so strong and so proud.
Thursday, February 4, 2010
Do you ever wish you could rewind time? Do you ever wish that if you had just done that certain thing different everything would have been better? Some days I wish some days I don't . Today is one of those days. I starting thinking about what I really missed out on in Noah's first year of life. I feel guilty that I felt like more of a therapist than a mom. I am sure some of you can relate. I spent so much time of Noah's first year trying to "get him to do" that I feel like I lost some of his babyhood. I wish that I had taken more time to play and just be a mom. I know I did the best I could but I could have handled things better. I could have stopped to smell the roses instead of walking by them. I wish that I didn't take hours out of our day to do therapy, instead we should have been swinging in the park. I wish that I was more like I am today. Today I am so much more relaxed. Today I take the time to stop and smell the roses. Today playing, laughing and singing are way more important than therapy. Today delayed is ok and we just keep going. I know I can't change that first year but I suppose today is more important. I love you Noah.