eSpecially Ben

Last week, Ryan and Ben were on their own. I took the other two boys to visit family while Ryan worked and Ben attended Rainbow Camp. Several weeks prior, Ryan was invited to a departmental team building event for his work - attending an evening Charlotte Knights Baseball game at the new stadium. Since family members were invited to attend, Ryan wanted to take Ben to the game. However, handicap seating is only in certain areas and it would mean he would sit away from the other 50 co-workers - making the idea of a team builder null and void. Ryan struggled with this for a few weeks. I lined up someone to stay with Ben, thinking the decision had been made for Ryan to go alone. One day, Ryan called me from work, excited and relieved. He had a meeting with his two supervisors, and at the end of the meeting he shared his dilemma with them about the baseball game and seating arrangements needed for Ben. Within hours, the seats for the game were changed to include the handicap section f

Ben may have been asleep in the car minutes before he got to camp, but once he awoke and realized where he was, his excitement was visible. Rainbow Camp is part fun, part spiritual activities, but mostly about forming bonds and friendships with other campers, buddies and counselors. Hugs are abundant at this camp. This year, during their week of training, the counselors watched as a few of the parents of the campers talked about their child, the best ways to work with their child and finally, what Rainbow Camp means to their family in a video. Below is the video of me speaking about these things. I was lucky to have some help from Ryan, a family friend. Elizabeth, Ben's former teacher and now our family friend never misses a chance to give Ben a hug. Each day, a team of youth counselors create a puppet show for the group. Singing and dancing are always part of the fun. Play the game, "Where's Ben?"

Today we visited Ben's new neurologist, Dr. G. Ben's former neurologist, Dr. N, retired. For eight years, she developed plans for Ben's seizures, sleep issues, genetic testing and then tracked his progress with communication and cognitive abilities. Although she mostly used words that went over my head, she spent time with us, listening about developments and asking questions. We were never rushed and Dr. N was always precise and direct. At times, I wanted to remind her that Ben was not a toddler anymore and baby talk was no longer necessary, but even still, Dr. N was a hard act to follow. As with any doctor visit, the patient must be weighed. This office had a cool roll-on scale for a wheelchair. This saved me the lovely ordeal of holding Ben and getting weighed together, and then stepping back on for a solo weigh. This time, Ben's chair was weighed separately. The scale read 105 lbs for the chair and Ben. This confused me, but I had little time to contemplate beca