At 9:00 this morning I waved good bye to Paul and Clark. They were driving to Burien where Paul has played racquetball every Wednesday for many years. He was going down to play and Clark was going down to sit. Most of us would not enjoy sitting in the car in the parking lot for two hours but Clark is content to just sit, unlike Phil. At noon they would be going to the hospital (Highline Medical Center) so Clark could have a chest x-ray. For the past few months he has seemed to be winding down, not wanting to go to Special Olympics, taking a long time to dress, not feeling well enough to go to church (which he normally hates to miss) and complaining about aches and pains in his side. I have often wished that I could slip into his skin for a few minutes to determine what it is he is feeling. We finally took him to his doctor who recommended a chest x-ray which showed a large abscess in one of his lungs, probably caused by aspiration after a grand mal. He has been on an anti-biotic for three weeks. If that does not clear it up he will have to have a bronchoscopy.
On Memorial Day we went to Olympia to visit our daughter, her husband Colt and our grandson. We walked over a mile to a restaurant and then on our return we took a detour so we could see Capitol Lake. Clark kept up. As we walked past the Capitol Building and into a residential area I turned around to see if Clark was still keeping up with the six of us. He was staggering. He was headed into a grand mal so we helped him lay down on the grass. After 15 minutes he was through with the seizure but not well enough to walk another mile. Colt ran home to get the car and returned to pick up Clark. It is interesting to me that Clark has the majority of his seizures (about eight seizure days a month) at home. Seizures have been part of the pattern of our lives since Clark was four and diagnosed with epilepsy which affects 20% of those with fragile X. Phil is not affected. Despite four different seizure medications he is not seizure free but he enjoys life and always prays fervently for help when he can tell he is going to have a seizure.