Ben carefully rolled the red ball down the ramp without looking - a challenge he added to the event himself. His eyes were on the volunteer with the hot pink socks, thinking, "Where can I get me some of those?" Then, his attention turned to the ramp and looked for where the ball might end up after his big push. Or he noticed the two cute teenage girls hanging onto his every move. Actually here is the real story: Ben participated in the Bocce Ball event only after waiting 2 hours and Grandma having to ask why her grandson did not get to have a chance. Supposedly they had called his name and none of us heard it. Ben did not have a medal ceremony which will be a difficult conversation with the brothers. In their eyes, Ben's worth is tied to those medals. They have been holding out for a Gold far too long, in their opinion. Ben was actually excluded in more ways than not getting his name called today. Because he is in a wheelchair, he was signed up for
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.