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 30, 2010

Update Since I've Been Blog Lazy.

I really haven't had much time to blog lately and my motivation to blog has been horrible. But I'm back. There has been so much going on in our lives I don't know where to start. We had a busy July and August. We attended the RTS conference in July and spent two weeks in NY with my parents at the beginning of August. Yes, I traveled alone with both kids. It was hectic but went better than I was expecting. Noah was a perfect traveler, looking out the window the whole time and playing his laptop. Mr Nick on the other hand wanted to rock the whole airplane. He was not too keen on sitting on mommy's lap the whole time. The whole plane knew how he felt I'm sure. When we got to NY both kids came down with a illness. Nick had a double ear infection, sinus infection and tonsillitis. Noah came down with bronchitis. Yeah two kids on antibiotics. But we had a nice time with family. The kids got to meet their new nephew Adyen and Nana got to practice her new found signing skill. Thanks Mom for taking the time to learn how to communicate with Noah, it meant the world to me! Hopefully the kids will get to meet their new niece Summer soon too. In other news...

Noah has been doing fantastic in school. He is going 5 days a week for four hours a day. He is developing leaps and bounds since he has started. He is using the potty at school and home. Yesterday was huge, Noah took me to the potty and pointed to it. I asked him if he had to go potty and he signed "yes". Low and behold he instantly peed on the potty. I was so excited. I know we have a long road of potty training ahead but this is a great start.Noah is also signing tons more and we have started him on a low tech communication device for now. We are hoping to move onto a
Ipad very soon. Brandi, I will be calling you soon for advice!!!

Yesterday Noah and Nick had their first experience at a adventure park. Noah rode a rollercoaster and go cart for the first time. He didn't know what to think of it. I'm not sure if he was liking it or not. He just had a blank look on his face. Nick rocked the place, just like he did on the plane. I spent most of the day chasing him. Nick is a firecracker!!! We had a great day..

Here are two recent pictures of the boys..

Friday, August 20, 2010

Understanding The Pain

I can't get out of my head and heart what happened today so I figured I would write about it. Today Noah had a check up at the eye Dr. As we were walking out to the waiting room to wait for Noah's eyes to dilate, I heard the screams. I looked over and saw a Mom with her son ( around 9 or 10 years old) holding him down while he screamed. She was stroking his head as the screams got louder and louder. He was obviously having a horrible melt down that was getting worse and worse. I knew the child had special needs of some sort but was not sure what they were. He was non verbal and struggling to sit up. The room started to clear with parents that were looking away or moving to the far end of the room. The mom had her head down and wouldn't make eye contact with anyone. In that moment, I felt her pain. I didn't know what to do because my eyes were filling with tears for her. I wanted to scream back at all the parents that stared with dirty looks on their faces. I wanted to yell "you don't get it." Instead I took Nicholas and sat across from her and when she looked up I smiled. She looked at me horrified as if she was thinking "I'm so sorry. Even though I said nothing to her, I sat there in the chair across from her the whole time. I wanted to help but there was nothing I could do. So instead I cried on the way home. I cried because I wish people could understand the stares and dirty looks are so hurtful. Even though after a while your skin does thicken it still will always be somewhat painful. Maybe I cried because I could imagine that happening to me one day and hoping there would be someone to give me a smile. I hope that if you are reading my blog and you don't have a child with special needs you will choose to smile. Don't look away. Don't give dirty looks. Don't assume the parent is not doing their job. Just try to understand. You never know what someone is going through. I will not deny that sometimes it's painful to raise a child with special needs. I would be lying if I didn't admit that. And I choose to be honest with myself in regards to that. Today I truly "got it". Today I smiled and I hope that eased the Mom's pain.