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, 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.