Paul played his guitar before Mass on Saturday night.
He felt terrific and had very little pain!
Paul is busy setting up the program on the panel.
Jon and Paul in the new 'workout room'.
Jon is busy assembling the weight bench. That was a real workout too!
Taking it easy...............no sunglasses, flashing camera is okay too!
_____________________________________________________________________
Paul was doing so poorly last Wednesday that I called the doctor's office to see what else we could do for his head pain. I was told to come to the office the next morning and they would adjust the shunt. Paul and I left at 5:30 and we were able to sail right up to Charlotte with very little traffic. We got to the doctor's office and found out that he was going to be in surgery all day and we would not be seeing him. His assistant had the day off. One of the nurses adjusted the shunt and they took an x-ray. In 20 minutes, we were back out the door. I was extremely disappointed about not getting to see anyone who could answer a bunch of questions I had. We had not heard back about the test results from the 14th and 15th of June and we hoped we would hear about their outcomes.
After this appointment, we also were going to have an appointment for the electrical stimulation treatment Paul receives every couple of weeks. We were about an hour early, so I parked under the shade of a very large tree. I tried to get Paul to drink a lot of water before the appointment, but his stomach was also hurting and he said he felt like he would get very sick if he drank one more thing. I felt very frustrated because there would be little use in us staying if Paul could not drink the necessary amount of water. He was lying down in the far back seat of the van and was really irritable. I was standing outside of the van with the side door open, trying to decide what to do. I had made a trip all the way to Charlotte and it appeared it was going to be pretty much a wasted trip. I decided to stay for the next appointment anyway, as I wanted to talk about what the time frame was for these electrical treatments. I was also hoping we might get to see the doctor at this office. We waited the hour and then went in. Paul was hooked up and within 10 minutes, Paul could not stand the pain of the electrical charge. The technician said it was because he didn't drink enough water to help conduct the electrical current through his body. I asked her to explain exactly how much water Paul needed to drink so we not only would have him prepared for the next appointment, but also Paul could hear how much water he was supposed to drink. He has argued with me a lot that he doesn't need to drink gallons and gallons of water each day. He says, "What? Like I will die if I don't drink 8 billion glasses of water each day? I drink tons of water and I don't need to drink anymore." Clearly, he is tired of having to drink water, but he doesn't seem to remember he drinks only about 4 glasses a day. I thought he was supposed to drink a quart of water in the hour before the appointment and I wanted him to hear it from a medical professional! She said he needed to drink "2 QUARTS OF WATER IN THE 2 HOURS BEFORE THE APPOINTMENT AND ANOTHER 2 QUARTS IN THE HOURS AFTER THE APPOINTMENT". I was as shocked as Paul when I heard this. He turned his head and looked at her and said, "Like I said, billions and billions of glasses of water, or I will die." I was immediately angry about the fact that no one told us it was supposed to be THAT much water! All these trips up to Charlotte and we had only been told that he needed to drink as much water as possible. I had read an article that mentioned the ONE quart before the appointment, but that was the only mention of a defined amount of water! All this time wasted. It was no wonder that there had been no help from these treatments. She explained to Paul why he needed to drink that much, which I was grateful for. But that information would have been a lot more useful 6 months ago.
I got out to the car and sat and cried. I had to let some of the stress out. There have been so many frustrations like this in dealing with the medical profession. They act like we all have medical degrees. Unfortunately, we don't always know enough to ask the very specific questions that would help us get the most out of our efforts. We deal so often with nurses and assistants and we get so much conflicting advice that it is amazing anyone gets healed. I started to do the 'woulda, shoulda, coulda' routine while I was sitting there crying. I thought about all the things I wished we had known so that we would not have had so much wasted effort and so many wasted hours chalked up. Then I thought about how hard we have all prayed. Surely that was not a wasted effort, right? Right God? Tell me it has not all been for naught! What the heck is all this about then? How many more prayers are needed to get Paul some relief????? How many more people have to lift Paul up in prayer?? I cried off and on all the way back to Atlanta. I talked out loud to God off and on, all the way back to Atlanta. I didn't get an immediate response. Okay God, I would wait, I said. But please help lead us in the right direction with this recovery.
On Friday morning, Paul still didn't feel well. Jerry had the day off and he was going to get Paul to work, even for just a little bit. He was going to try to get Paul as active as possible. Paul did go to work, but only for about an hour. Jerry took him to the pool, but there were too many kids there and the noise bothered Paul. So Jerry kept him active in other ways and he started to actually feel a little better that evening.
I went to Adoration at 1 P.M. on Friday and my friend Sharon Nixon happened to stop in. She asked me about Paul and I said he was not doing well. She showed me a book she was reading about how we need to remember that God is our Father in heaven. We were reminded that just as we took our problems to our fathers on earth, we were to take everything to the Father. He wants to help us and He wants us to come to him. So during Adoration, I closed my eyes and talked to Him like I would have done with own dad. He got to hear it all. After I finished my talk, I sat quietly for a little longer. Later, I had a great peace about it all and knew that from day one, we had placed our trust in Him. I trusted that while there have been outcomes that were not like we pictured, He is aware of all our needs. It’s that timing issue again! So I asked for the strength to accept all of the disappointing outcomes, the difficult scenarios we have been faced with and to please answer at least that part of my plea. Give me the strength to endure.
Saturday morning, I was getting ready to go see how Paul was doing. Before I got over to Jerry’s, Paul called me and said, “Jerry said I needed to call you to let you know I am feeling really good. He said you would want to know that.” I immediately knew God was giving us some relief and got tears in my eyes as I responded, “We’re on our way over!” Jerry’s mom came to our house about that time to drop off some flowers she got at the nursery for our gardens and she told us Paul looked pretty good and that he was feeling lots better. Jon and I went on over to Jerry’s after that. Paul was in great spirits and he was telling us all the things he was going to do that day. They were going to build the bike for him and were going to set up the weight bench. Jerry’s basement is sectioned off into rooms, but it still needs the drywall. Paul and Jerry had planned it all out, where everything was going to go. So, Jon stayed to help them and I left to visit with my mother and take her around with me to run errands. Jon and I were so happy to see Paul feeling so well – it was like night and day. I could hardly wait to get back to Jerry’s house.
Saturday night, Paul asked his friend Jonathan to come over so they could watch a movie. The real test about how well Paul was feeling was when Jerry was taking a picture of him with his sunglasses off and he looked up and said, “You can take it with a flash, it won’t bother me.” We have not been able to take pictures where Paul wants us to tell him when we are going to have to use the flash. He wants to close his eye first, even with sunglasses on. He really hates the flash. So this was a huge statement to hear from him!
Paul put in a full day and went to Mass on Saturday evening with the Hufford family. On Sunday, he stayed at our house. As I prepared brunch, Paul, James and Jon were playing guitars in the front room. I got the video camera so the moment could be saved. It was so much fun listening to them. In the early afternoon, he stood by as I gave Abby-dog a ‘trim’. He wanted to make sure I didn’t cut off too much or do a poor haircutting job. We were out in the heat of the day and it was really uncomfortable. Paul handled it really well and did not complain of a really bad headache. He said it was in the low 4’s. He was not going to leave his dog’s side while I had a pair of scissors in my hand! When I was finished, I noticed his sideburns and the back of his hair line were getting long. I asked if he wanted me to trim his hair, while I was at it. He called out to Jon and Michael, “Dad, Mike – watch out, mom has a pair of scissors and apparently she is looking to cut some hair.” He then walked to a mirror and looked at his sideburns. He said, “Okay, so maybe they need a bit of a trim. Go ahead, but don’t take a long time doing this.” So Paul and Abby left our house looking very neat and tidy, if I say so myself! Both of them were spared a ‘buzz cut’.
Sunday evening, Paul took his friend Jonathan out to eat. When he got home, he called and wanted to see if anyone wanted to watch the Braves baseball game. James and Michael were really tired, so Jon and I went over. We watched about 3 innings with him, then we said goodnight. Jerry said he stayed up kind of late and he noticed that Paul had written down 1:50 A.M. on the sheet they use to help Paul remember when he takes his Advil. The good thing is, Paul is taking control of getting his own pain medicine and keeping track of the times he takes it so he and everyone else knows when he had his last medication. Jerry started that approach and it is working. It let him know also that Paul had been up during the night due to pain. This morning, Paul was mainly just tired. He will go to work this afternoon. We have to watch him closely for the signs of over draining caused by the change of the shunt setting. But, just possibly, we have found the right setting and he is on his way. That is my prayer today.
After hearing the gospel about John the Baptist yesterday, I have also added a prayer to my list - that I will learn how to endure the difficult times with greater trust and joy. Our most beloved saints were able to show joy even in the most difficult/painful times. They stayed focused on bringing the glory of God to everyone around them through their great faith and most importantly, their joy. When I mentioned how easily I can despair sometimes, my mom said I should start to sing a song to Blessed Mary and sing it with joy. It will make me feel better and if satan is around, it will send him fleeing! I smiled as I pictured this, wondering if it would actually be my off-key solo that would send him running into the night!
Either way – works for me!
Our Father, hear the prayers of your faithful.
Love,
Jon and Rebecca