Ben has had a rough couple of weeks between his finger getting caught on something at school causing much commotion in his classroom, a fall at his PT therapy session leading to a black eye, scratches on his head and chin from some other mishaps and ending this past Friday with a trip to the ER in NY when Ben fell off the sofa at his grandpa's house and cut open his already beat up chin. I may have mentioned before that I do not like blood. I need to clarify - I steer clear of the red stuff when it is outside the body. At a neighborhood Halloween party, I heard crying. I ran to see if it was Sean, my youngest. I was correct, it was his cries I heard. As soon as I saw the blood all over my son's mouth, I took an about-face and headed for another room in the house, letting my husband assess the damage. Luckily, Ryan is the only one who saw me avoid my screaming bleeding child. When Ben got hurt in NY, I was still in bed. Ryan called up to me for help. I assumed it was a bathr
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.