This is a re-post from 2010. The night after St. Patrick’s Day long-time, dear friends of ours invited us to their ten-year old daughter’s exhibition of Irish Dance at a local college. Logan and Ben were my companions on this adventure – an adventure because the event was a good 25 minutes away and did not begin until after 7pm. And did I mention it was a school night? Ben sensed we were going somewhere different. Before we got out of the car, Ben’s arms and legs were moving a million miles an hour. This was a sure sign he was excited and happy to be out and about. Taking Ben somewhere new comes along with a lot of worry – Will I be able to get Ben easily to the location? Will Ben behave? Will he make his noises? Will we have to leave early because he’s not enjoying it? How will others react to him? I usually push past the worry, hope for the best and fly by the seat of my pants if needed. When things go well, an emotion I have not been able to label, takes hold of me. ...
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.