When Ben's new teacher in middle school texted me to see if it was okay for Ben to go to the book fair, I wrote back, "Sure." After a moment, I realized Ben had never been to a book fair, at least that I could recollect. I wrote the teacher again and told her that this was Ben's first opportunity to shop the book fair. I was so proud of Ben when he came home with a book and a poster. We recently made some changes to his room and he had a blank wall above his bed - I guess he saw the need to fix that! The poster was a perfect fit. Ryan insists that Ben was trying to tell us something other than he needs more decoration in his room, but I am not touching that one.
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.