My son Patrick and I had plans to go to Columbia, South Carolina this week. It was to be a father-son weekend just hanging out. While participating in the Exon Skipping Trials at Nationwide Children’s Hospital last year his manual wheelchair was damaged. The airlines repaired the chair and in a “goodwill gesture” they also provided two round trip vouchers for us to use at a later date. South Carolina was Patrick’s choice and he had a good reason for wanting to go there.
I suggested we use the vouchers to go to some place warm during the winter. I mentioned Tampa or Atlanta, but Patrick had another idea. He saved his money and bought tickets to see Taylor Swift in concert. I don’t know if I’ve ever heard any of her music, but if Patrick wanted to go it was my job to take him. We had no other plans for the two days we would be in Columbia and that was fine with me to just to be with him.
Last month Patrick broke both legs on his way to clinic. His left leg is now in great shape, but his right leg is healing more slowly. His legs were broken near the first of October and I hoped they would heal in time to take him on this trip which we’ve been planning since summer. After four weeks in a cast his transfers were getting much easier. A week before our planned flight from Maine his cast was removed and replaced with a sturdy brace. I told his orthopedic surgeon of our plans and while he wasn’t thrilled, he saw our determination and offered to replace Patrick’s cast if the brace didn’t work well telling us to be very careful. Transfers were again tedious, but I held out hope he would be fine for travel. Patrick went to school Monday and Tuesday with the brace, yet he just wasn’t comfortable during transfers. In the back of my mind I kept thinking of options. I woke up at night and for hours would consider how to transfer him on the plane. I looked over the manual chair he uses for travel trying to come up with the best way to support his leg. I didn’t want to disappoint him, so I kept encouraging him to lower his leg while is his power chair to practice being in that position. As much as we tried to be careful with transfers, Patrick just wasn’t comfortable.
On Tuesday evening Alice told me Patrick had decided he couldn’t travel. I expected the worst, thinking he would be very upset when I got home from work. To my relief he was in a better mood as the stress and worry about being transferred on a plane and into a shuttle were gone. It was a very mature decision and I am proud of Patrick for realizing that seeing Taylor Swift wasn’t worth the risk of possible re-injury. I am both proud and heartbroken knowing how much this meant to him.
The concert tickets are non-refundable. The airline tickets will have no value. These details are minor compared to the disappointment Patrick must be feeling. The bright side is he was able to tell me he wasn’t ready to travel and was willing to forfeit this trip to avoid the possibility of long term complications. Patrick may have Duchenne, but it hasn’t affected his judgment. For that I am grateful.