Paul surprised us Thursday evening when he ate a full meal, then asked what could we all do. Since his energy doesn't last long, we had limited choices. He asked if we could take a walk, which took us by surprise, as it sometimes is a bit of an effort getting him to do that. He told his dad to put a leash on Abby, he didn't want her hit by a car. He is always very aware of safety issues when we walk down the street, especially since we don't have sidewalks. Welcome to Georgia "Where the Sidewalk Ends". I am sure it was for financial reasons that sidewalks were never put in when the neighborhoods were developed, but not until the late 1990's did they start that. In fact, it is a real selling point in their ads - 'lighted streets AND SIDEWALKS!' Jon says it seems as silly as a car advertisement that says 'cup holders included'. It was very strange to Jon and me when we moved here, that sidewalks were missing in every neighborhood we looked. Anyway, back to the topic. It is one more example of Paul paying a lot closer attention to details than you would imagine.
He stayed up pretty late, but at 11:30 P.M. he had a very bad headache again and needed the prescription pain medicine. It was a great day in that he had taken 2 walks, had eaten and seemed to be in really good spirits all day. I kept thanking God as I fell asleep for the peace that was ours in that day.
Friday, the secretary for the eye specialist called and said the eye weight was in. Paul and I went and picked it up, which was a long hike from the parking garage to the doctor's office. He held up much better than I thought he would. He asked what we were going to have for lunch, but when we got home, he was no longer interested. He said his head was throbbing again. He didn't want to try the eye weight and was adamant that he just wanted to be left alone. The day went downhill from there, and he did not eat any food. All nutrition was by tube feeding. He did walk downstairs when his Aunt Bev, Uncle Joe and Courtney came by in the evening, but apologized for not being able to stay downstairs and went back to bed.
Today, he just wanted to keep sleeping. It took a big effort getting him up for breakfast and a shower. Only the shower was a success and a walk at St. Stephen's with Abby. He did not want to eat again today either. This is the most frustrating part of the whole recovery process. He just can't seem to get ahead of the game and move forward very far and wants to sleep all the time. He does need to rest, but we are not sure how much he really needs and if it is just the headaches that are wiping him out or if he has become his own problem. As we approach the 6 month mark, I can see my mental projections where I thought he would be by this point are way off the mark. Yes indeed, time to adjust those projections and pray for success in learning more patience.......smile. When I was talking to my sister today, I said that I am going to be 'the squeaky wheel that gets the oil' this week. We did not hear from the neurologist at Emory about an appointment this next week, as told to us by the clinical manager. We really need a team effort in moving Paul along, since we have basically a 'patch work quilt' approach that has not really helped. Case in point, the eye specialist called today to see how the weight worked. I said I had tried it this morning and it did not keep the eyelid closed. It is not heavy enough. He said we should probably opt for the surgically placed spring. I said we were really hesitant to even consider that since it has a high rate of complications and until we settle the shunt complications, we can't subject Paul to any other surgeries at this time. He is so physically weak, that we would like to pursue the correct sized weight first. Since this doctor is not familiar with the shunt problems, he is focusing only on the eye issue. We would like to have one doctor who could oversee and coordinate all medical procedures needed pertaining to the eye, the middle ear and the complications of the shunt. I am not sure this set up exists, but my voice is going to be heard this next week as I search for it............smile. It is tough to navigate through all of this due to our ignorance, which also makes it hard to ask the beneficial questions needed. Prayers for guidance are on my lips throughout my day, with the trust that God will lead us according to His holy will.
We really want Paul to know that we have not given up and that through prayer, we will reach the end goal. Since he doesn't want to be downstairs very much, we have met him where he is. We sit in his room every night to say the rosary, whether he is sleeping or not. He doesn't say the prayers out loud like he used to, but I can see him mouthing the words and doing the sign of the cross at the right times when he is awake. As we pray the first 3 Hail Mary's for an increase in the virtues of Faith, Hope and Love, my whole heart is in it! As long as we remain willing to do God's will, surely we will grow in these virtues. I pray so often for those who are suffering and those who care for the elderly, the sick and the dying. What a huge calling that is and I draw so much strength to carry on when I remember those who have had much heavier crosses to bear, for much longer periods of time. So many holy men and women to emulate. Thanks be to God for their examples.
Today is the feast of St. Catherine of Sienna,(1380 A.D.) Doctor of the Church and a Dominican nun, stigmatist and papal counselor. Below I have included a writing of hers which I read this afternoon before I had finished this posting. It is a bit long, but certainly confirmed what I was thinking today. I can't help but marvel at the timing of this writing, and believe this is one of the many numerous ways God speaks to us throughout our days!
Christ and the Sea
Eternal Godhead! I proclaim and do not deny it:
you are a peaceful sea in which the soul feeds and is nourished
as she rests in you
in love's energy and union
by confirming her will with your high eternal will-
that will which wants nothing other than
that we be made holy.
So the soul who considers this
strips herself of her own will
and clothes herself in yours.
Oh, Most gentle love,
it seems to me you are showing
that the truest sign people are dwelling in you
is that they follow your will
not in their own way
but in your way.
This is the surest sign that people are clothed
in your will:
that they see the cause of events in your will
rather than in human will,
and that they rejoice
not in material prosperity
but in adversity,
which they see as given by your will
and motivated only by love.
So they love adversity
just as they love all the things you have created,
all of which are good and therefore worthy
of love.........
I beg you to guide toward yourself
the heart and will of the ministers of holy church,
your bride,
so that they may follow you.
Bring them together now
and wash them, divine Compassion,
in the calm sea of your goodness.
May you see and understand the signs all around that speak to us of God's love and His will.
Love,
Jon and Rebecca
Saturday, April 29, 2006
Thursday, April 27, 2006
Back In The Saddle Again
We started where we began in January. I got Paul up and slowly got him ready to take a walk at St. Stephen's today. He was very alert and got up willingly, which was a relief. He has been very irritable in the last 2 weeks and I was wondering how it would go today when I would explain to him we were going to get back on the schedule we had months ago. The weather was also agreeable and could not have been more pleasant. It was about 70 degrees, a northern wind blowing, which meant little humidity and an incredibly blue sky. Perfect walking weather! Abby was beside herself with happiness when I asked her if she wanted to go with us, as I jingled the keys.
When we got there, I asked Paul to try to walk to a light post just a short distance way and as we approached it, he kept walking. He either had not heard my stated destination, or he felt strong enough to go further. I didn't say a word, and let him decide how much he could handle. We walked all the way down to the bottom of the parking lot and then back up the hill to the car. It was a very slow pace, but he did a great job. Then, he sat in the van while I finished walking around the lot 3 more times so Abby could get back on track with some excercise. She has picked up some weight these last 2 months and needs to get more activity in her life. Needless to say, I am speaking for both of us! Smile. When we finished, I got her some water, then asked Paul if he would like to go into the sanctuary and we could say a prayer of thanksgiving for his ability to get outside and walk again. I knew he didn't really feel like moving, but he made the effort and we were able to walk in and say a few prayers together. I fought to hold back the tears, but I was just so thankful for that moment in time. The church was beautifully decorated for Easter and in each window there is an angel with lots of flowers and so I asked all the angels and saints to join us in our prayer of thanksgiving. It was truly another one of my 'pockets of peace' that give me the strength and grace to move forward no matter what comes my way.
Later this afternoon, I decided to see if Paul would take another small walk down the street and back. He is so awesome...........he got right up and we walked until he made the decision to turn around. He sat on the couch for awhile, then asked for some Tylenol and had to go back to bed. I will have Jon help him do some upper body excercises this evening if possible. I am so anxious to get Paul up and at least moving again, but also have to be very mindful of the fact that he is so weak due to a month of being in bed 90% of the time. Looks like we may need to order a case of Wheaties!
I got to have a long talk with my son James today. He also brought lots of comfort to me. I was saying how wonderful it had been to be in church today, in front of the tabernacle and how I wished we could go to Mass every morning. I told him that I have learned so much since November 11th, and the one really big thing is that I will never take for granted again the blessing of being able to attend Mass each day. I look so forward to that. He told me to not be upset because he and my oldest son, Jon, were going to Mass each day for our family. He said that he is glad that he can return what his parents have done for him all these past years. Words cannot describe the joy that is in my heart today. I know that God is lovingly taking care of His world and His children and I am graatful for this knowledge.
May we go in peace and proclaim His goodness to all.
Love,
Jon and Rebecca
When we got there, I asked Paul to try to walk to a light post just a short distance way and as we approached it, he kept walking. He either had not heard my stated destination, or he felt strong enough to go further. I didn't say a word, and let him decide how much he could handle. We walked all the way down to the bottom of the parking lot and then back up the hill to the car. It was a very slow pace, but he did a great job. Then, he sat in the van while I finished walking around the lot 3 more times so Abby could get back on track with some excercise. She has picked up some weight these last 2 months and needs to get more activity in her life. Needless to say, I am speaking for both of us! Smile. When we finished, I got her some water, then asked Paul if he would like to go into the sanctuary and we could say a prayer of thanksgiving for his ability to get outside and walk again. I knew he didn't really feel like moving, but he made the effort and we were able to walk in and say a few prayers together. I fought to hold back the tears, but I was just so thankful for that moment in time. The church was beautifully decorated for Easter and in each window there is an angel with lots of flowers and so I asked all the angels and saints to join us in our prayer of thanksgiving. It was truly another one of my 'pockets of peace' that give me the strength and grace to move forward no matter what comes my way.
Later this afternoon, I decided to see if Paul would take another small walk down the street and back. He is so awesome...........he got right up and we walked until he made the decision to turn around. He sat on the couch for awhile, then asked for some Tylenol and had to go back to bed. I will have Jon help him do some upper body excercises this evening if possible. I am so anxious to get Paul up and at least moving again, but also have to be very mindful of the fact that he is so weak due to a month of being in bed 90% of the time. Looks like we may need to order a case of Wheaties!
I got to have a long talk with my son James today. He also brought lots of comfort to me. I was saying how wonderful it had been to be in church today, in front of the tabernacle and how I wished we could go to Mass every morning. I told him that I have learned so much since November 11th, and the one really big thing is that I will never take for granted again the blessing of being able to attend Mass each day. I look so forward to that. He told me to not be upset because he and my oldest son, Jon, were going to Mass each day for our family. He said that he is glad that he can return what his parents have done for him all these past years. Words cannot describe the joy that is in my heart today. I know that God is lovingly taking care of His world and His children and I am graatful for this knowledge.
May we go in peace and proclaim His goodness to all.
Love,
Jon and Rebecca
Wednesday, April 26, 2006
Twin Blessings
Wednesday 4:30 PM
Late yesterday, Paul had the CT scan to see if the programmable shunt was working as hoped or was overdraining the ventricles. They gave the copy to me to take with us this morning. I had seen Paul's previous scans so I knew what to look for. As I told you before, I don't like suspense and while I have to wait to see what the full recovery God intends for Paul somewhere down the road, I did not wait to see what the results were. I looked at them as soon as I got home. My heart was absolutely pounding as I pulled the film out of the envelope. I immediately recognized that the ventricles were very full, which was a good thing. It meant we did not have an over drainage problem and that the neurologist would need to adjust the shunt down a notch. That is the direction we needed to go. Since it was set at the hightest level, which means the least amount of fluid was being drained, it would have been a real problem for Paul if it drained too much off at that setting. But with being able to move down off that setting, it gives us room to grow in the future if need be. Today, the neurologist moved the setting down one level and said it will take a few days for the difference to be felt. It should ease his headaches since there will be less pressure. We will continue to pray that the settings will move downward and the correct balance will be found without any complications. We are to see the doctor in a month, unless anything changes. They also removed Paul's stitches, so we are free to get him a full shower where he can wash his hair. He is now free to grow his hair to whatever length he chooses!
I also asked about when rehabilitation could be brought back into Paul's life. The doctor said there is no reason Paul cannot continue. As long as the headaches start to ease, he should be able to work on rebuilding his strength. The timing is great because we have been contacted by the clinical manager at Emory, and he has set up an appointment with the head of the Neurology unit, which has a lot of experience in the use and monitoring of shunts. They will help us coordinate all of Paul's needs as he moves forward and oversee the appointments needed with different doctors to settle the problems with Paul's eye and his ear. We have not even addressed that issue yet. He may need to have surgery to repair some damage in the middle ear. In an initial appointment Paul had while at Shepherd Center, we were told that there is possibly a way to help recover some of Paul's hearing and we are now hoping to pursue that avenue as well. We had the delay caused by the pneumonia, followed by hydrocephalus. It is our prayerful hope that we can get back on the track with the overall movement forward in Paul's healing and rehabilitation. The main area of focus will be in the area of speech therapy, most especially in keeping his muscles toned on the left side of his face. We are praying for a full recovery of the 7th cranial nerve and if that occurs, keeping the muslces toned will be very beneficial.
Speech therapy also covers areas of cognitive thinking and he will need to work on areas that were impacted by the brain injury. To what extent of damage there is, we are not really sure. Memory issues will be a major factor, that is certain. There is a lot of therapy that can help Paul get his independence back and help him function in the community again. He will be helped to regain the skills needed to go back to work and hopefully school. He does have a long road ahead, but if we are truly blessed with a stabilization of the complications of the shunt, we can at least begin to plan out what the next strategy will be in moving Paul towards the western border of Alabama!
As always, I find peace in the thought that we only have today, and today was good in that we had a positive outcome with the use of the programmable shunt.
Actually, there were some other positive things that happened in the last 24 hours. Paul did not need any pain medication yesterday and only needed some Tylenol today after lunch. Paul was able to sit at the table last night and eat dinner with us. Our friend, Sharon Nixon, kindly brought dinner to us and Paul hugged her and she even got him to laugh. He has not done that in weeks, nor had he joined us at the table for that long. The 3 surgeries in 4 weeks had him absolutely wiped out. He also stayed up until 10 P.M. last night with his cousin Courtney, who was staying with him while we went to Michael's Spring Band Concert. Of course, the concert was a terrific diversion for me. Aunt Bev, Uncle Joe, Jon and I went and Michael had not told us that it was going to be a very special event. The Parkview Band won an award that has been given to only 1 other Georgia high school band. They were presented with The Sudler Flag of Honor, which is administered by The John Philip Sousa Foundation. The award is an international award recognizing high school concert bands of outstanding musical excellence. Only 2 schools in Georgia have ever received this award, and Michael was part of the concert band that received this award this year at Parkview High School. We were so thrilled to watch as Dr. John Culvahouse, who is on the Board of Directors of The John Philip Sousa Foundation and also the National Band Association had the flag presented. The Georgia Senate also voted on a piece of legislation that states that April 25th will be honored as Parkview Band Day!
We all enjoyed the evening so much. I admit it, me especially, since I had taken a sneak peek at Paul's CT scan and was feeling so much at ease knowing it was working as we had hoped! I had to thank God that I was allowed to know this ahead of today's appointment. While I have complete trust that He is directing the show, I appreciated being allowed the concession of knowing a little part before it played out! As stated before............I don't like suspense, but am working really hard on total acceptance of what is placed on our pathway each day. Mind you, the CT scans were placed in my pathway........and directly into my hands!
Interestingly, the meditation of the day in my Magnificat prayer book is written by Fr. Zlatko Sudac. He is a priest who lives in Croatia, and he gave a retreat that our son Jon attended while he was in Medjugorje. He writes:
" The one who lives for people receives a great deal from people. These are the things of value which are eternal. One of the main reasons for our existence on earth is to be people who love and who live for other people. Today, this is very necessary. I pray to God for the grace to have a heart for every human being.
I asked myself if I would want to be a person who was loved (by others) out of habit. How does God feel when we love him out of habit? Then I understood that love for God is something that is alive and original, something which changes our life, and which gives us the power to bear witness to other people. To love God in the present moment. To be alive now, not tomorrow or in the past. To live every step with God. It means to be God's messenger. That is something which has always awakened withiin me a certain adventure for God. God's the Father of all people who wish to proclaim Jesus Christ. One needs to have a great depth of spirit to live for everyone, because Jesus died for everyone."
Our thanks to all of you who have 'had a heart' for us through prayers and actions. You also need to know that not only we have received so many blessings from your prayers, but also Marie's sister Diane. She gave birth to the twins last week (a boy and a girl) and they are healthy and at home. They weighed at least 6 lbs each! I know I can hardly hold onto the joy this news brought to me!
Thanks be to God,
Jon and Rebecca
Late yesterday, Paul had the CT scan to see if the programmable shunt was working as hoped or was overdraining the ventricles. They gave the copy to me to take with us this morning. I had seen Paul's previous scans so I knew what to look for. As I told you before, I don't like suspense and while I have to wait to see what the full recovery God intends for Paul somewhere down the road, I did not wait to see what the results were. I looked at them as soon as I got home. My heart was absolutely pounding as I pulled the film out of the envelope. I immediately recognized that the ventricles were very full, which was a good thing. It meant we did not have an over drainage problem and that the neurologist would need to adjust the shunt down a notch. That is the direction we needed to go. Since it was set at the hightest level, which means the least amount of fluid was being drained, it would have been a real problem for Paul if it drained too much off at that setting. But with being able to move down off that setting, it gives us room to grow in the future if need be. Today, the neurologist moved the setting down one level and said it will take a few days for the difference to be felt. It should ease his headaches since there will be less pressure. We will continue to pray that the settings will move downward and the correct balance will be found without any complications. We are to see the doctor in a month, unless anything changes. They also removed Paul's stitches, so we are free to get him a full shower where he can wash his hair. He is now free to grow his hair to whatever length he chooses!
I also asked about when rehabilitation could be brought back into Paul's life. The doctor said there is no reason Paul cannot continue. As long as the headaches start to ease, he should be able to work on rebuilding his strength. The timing is great because we have been contacted by the clinical manager at Emory, and he has set up an appointment with the head of the Neurology unit, which has a lot of experience in the use and monitoring of shunts. They will help us coordinate all of Paul's needs as he moves forward and oversee the appointments needed with different doctors to settle the problems with Paul's eye and his ear. We have not even addressed that issue yet. He may need to have surgery to repair some damage in the middle ear. In an initial appointment Paul had while at Shepherd Center, we were told that there is possibly a way to help recover some of Paul's hearing and we are now hoping to pursue that avenue as well. We had the delay caused by the pneumonia, followed by hydrocephalus. It is our prayerful hope that we can get back on the track with the overall movement forward in Paul's healing and rehabilitation. The main area of focus will be in the area of speech therapy, most especially in keeping his muscles toned on the left side of his face. We are praying for a full recovery of the 7th cranial nerve and if that occurs, keeping the muslces toned will be very beneficial.
Speech therapy also covers areas of cognitive thinking and he will need to work on areas that were impacted by the brain injury. To what extent of damage there is, we are not really sure. Memory issues will be a major factor, that is certain. There is a lot of therapy that can help Paul get his independence back and help him function in the community again. He will be helped to regain the skills needed to go back to work and hopefully school. He does have a long road ahead, but if we are truly blessed with a stabilization of the complications of the shunt, we can at least begin to plan out what the next strategy will be in moving Paul towards the western border of Alabama!
As always, I find peace in the thought that we only have today, and today was good in that we had a positive outcome with the use of the programmable shunt.
Actually, there were some other positive things that happened in the last 24 hours. Paul did not need any pain medication yesterday and only needed some Tylenol today after lunch. Paul was able to sit at the table last night and eat dinner with us. Our friend, Sharon Nixon, kindly brought dinner to us and Paul hugged her and she even got him to laugh. He has not done that in weeks, nor had he joined us at the table for that long. The 3 surgeries in 4 weeks had him absolutely wiped out. He also stayed up until 10 P.M. last night with his cousin Courtney, who was staying with him while we went to Michael's Spring Band Concert. Of course, the concert was a terrific diversion for me. Aunt Bev, Uncle Joe, Jon and I went and Michael had not told us that it was going to be a very special event. The Parkview Band won an award that has been given to only 1 other Georgia high school band. They were presented with The Sudler Flag of Honor, which is administered by The John Philip Sousa Foundation. The award is an international award recognizing high school concert bands of outstanding musical excellence. Only 2 schools in Georgia have ever received this award, and Michael was part of the concert band that received this award this year at Parkview High School. We were so thrilled to watch as Dr. John Culvahouse, who is on the Board of Directors of The John Philip Sousa Foundation and also the National Band Association had the flag presented. The Georgia Senate also voted on a piece of legislation that states that April 25th will be honored as Parkview Band Day!
We all enjoyed the evening so much. I admit it, me especially, since I had taken a sneak peek at Paul's CT scan and was feeling so much at ease knowing it was working as we had hoped! I had to thank God that I was allowed to know this ahead of today's appointment. While I have complete trust that He is directing the show, I appreciated being allowed the concession of knowing a little part before it played out! As stated before............I don't like suspense, but am working really hard on total acceptance of what is placed on our pathway each day. Mind you, the CT scans were placed in my pathway........and directly into my hands!
Interestingly, the meditation of the day in my Magnificat prayer book is written by Fr. Zlatko Sudac. He is a priest who lives in Croatia, and he gave a retreat that our son Jon attended while he was in Medjugorje. He writes:
" The one who lives for people receives a great deal from people. These are the things of value which are eternal. One of the main reasons for our existence on earth is to be people who love and who live for other people. Today, this is very necessary. I pray to God for the grace to have a heart for every human being.
I asked myself if I would want to be a person who was loved (by others) out of habit. How does God feel when we love him out of habit? Then I understood that love for God is something that is alive and original, something which changes our life, and which gives us the power to bear witness to other people. To love God in the present moment. To be alive now, not tomorrow or in the past. To live every step with God. It means to be God's messenger. That is something which has always awakened withiin me a certain adventure for God. God's the Father of all people who wish to proclaim Jesus Christ. One needs to have a great depth of spirit to live for everyone, because Jesus died for everyone."
Our thanks to all of you who have 'had a heart' for us through prayers and actions. You also need to know that not only we have received so many blessings from your prayers, but also Marie's sister Diane. She gave birth to the twins last week (a boy and a girl) and they are healthy and at home. They weighed at least 6 lbs each! I know I can hardly hold onto the joy this news brought to me!
Thanks be to God,
Jon and Rebecca
Tuesday, April 25, 2006
These Eyes
I am sitting with the monitor to my right as I type this and can hear Paul's gentle breathing as he sleeps very soundly. ( I don't believe there is a more wonderful sound in the world than the sound of our children breathing peacefully while they sleep!) He really had a long and painful morning. It started with a very long walk from the parking deck to the doctor's office. It was a very welcome sight to see a couple of chairs that had ottoman's in front of them in the waiting room.........and the bonus - they were empty! Paul settled into one and dozed off and on while we waited for our appointment. He was examined by the nurse, who had to do some very painful preparations and then by a resident student who was assisting the doctor. Paul was not able to keep the patch on his eye throughout the entire exam and with his sensitivity to light, his headache was very painful, along with his eye hurting. He patiently allowed all the nurse, resident and doctor do all sorts of exams, but near the end, asked how much longer. For him to show any impatience, it must have become extremely uncomfortable. They numbed his left eye and moved the eyeball to see if there was any restriction which was adding to the paralysis issue of the 3rd cranial nerve. There does not appear to be any, which is a good thing. There were 2 other doctors who were part of the examining group. The doctor congratulated us on a job well done in protecting Paul's eye. He was literally amazed that the cornea was in such good condition, given that Paul's eye never closes. The first and immediate need is to keep Paul's eyelid closed and they have ordered a weight to be used externally on his eyelid. This will give them the time to review all of the cat scans done and the prior reconstructive surgery so that they can plan out a course of action to be taken in repairing the eyeball and the muscles and bones. There was a discussion of implanting a spring mechanism for the eyelid, which may be done at a later date. It is more successful in younger people's eyes, but the doctor did say that it comes with its own set of problems. We won't rush into that without getting a lot of information about its use. The less surgeries, the better. Obviously! It would be used for the long haul, if Paul's nerve does not regenerate. There is partial nerve damage to the 3rd cranial nerve, and it is not severed. There is no real sign of recovery of the paralysis in Paul's face yet, but we keep this all on our prayer list. The doctor also mentioned that there may be the possibility of repairs to the nerve, but without all the xrays and the doctor notes from the first surgery, he could not say definitively what all will be done other than the obvious repair to the eyeball placement in the socket. His nurse was very helpful in showing us how to tape Paul's eye closed and then covering it with a bandage that would help hold his eyelid closed. This is more preferable to the patch we have been using because the best protection for the cornea is a closed eyelid, not just a covering over an open one. It will be much more comfortable for Paul and we are all about finding ways to ease Paul's pain and discomfort! We should have the external weight in about a week or so. It is being ordered for us. It has 2 sided tape, and will be skin tone. It is placed on the lid right above the eyelashes. Jon jokingly said he will check out the tackle department to see about getting a fishing weight in the meantime. It actually makes you wonder that with all the advancements in technology, how little there is on the market that addresses this problem. The one they showed us could probably double as a fishing pole weight!
One thing that was reassuring was that Paul is still very alert and pays alot of attention to detail, which was evidenced by our ride in the elevator. He and I were going down and a woman got on also. I pushed the first floor, and I didn't see the woman push any button. When the elevator stopped, I started to help Paul get out of the elevator and he would not step forward. I said "Let's go Paul" and he just pointed to the number displayed up above. It was for the second floor, not the first. I laughed and thanked Paul for staying cognizant of his surroundings. He noticed that despite his headache and use of only one eye! I told him he might want to ask for a more alert caregiver, and at the very least, continue to remain ever watchful!
I took notice of the fact that he kept up his endurance the whole morning, which indicates that once we get past these headache/shunt issues, he should be able to regain his strength fairly quickly.
We have another event for the day and that is a trip to the hospital to pick up his xray copies and then to the appointment to get his cat scan done for tomorrow's appointment with the neurologist. Please pray that the shunt has not overdrained the ventricle, as that will be a really big problem. It is more preferable that the shunt is not draining enough brain fluid.
I had a thought yesterday that we are just one day closer to the recovery God intends and I am one day closer to my seeing Jesus as I pass from this world to the next. So much to pray for and do...............so little time! Instead of dreading the long waits, I will look forward to utilizing that time to pray without ceasing.
Psalm 89 from today's readings.
The favors of the Lord I will sing forever;
through all generations my mouth shall proclaim your faithfulness.
For you have said, "My kindness is established forever";
in heaven you have confirmed your faithfulness.
The heavens proclaim your wonders, O Lord
and your faithfulness, in the assembly of the holy ones.
For who in the skies can rank with the Lord?
Who is like the Lord among the sons of God?
Blessed the people who know the joyful shout;
in the light of your countenance, O Lord they walk.
At your name they rejoice all the day,
and through your justice they are exalted.
Forever I will sing the goodness of the Lord.
We place our trust in you, Jesus.
Peace to all,
Jon and Rebecca
One thing that was reassuring was that Paul is still very alert and pays alot of attention to detail, which was evidenced by our ride in the elevator. He and I were going down and a woman got on also. I pushed the first floor, and I didn't see the woman push any button. When the elevator stopped, I started to help Paul get out of the elevator and he would not step forward. I said "Let's go Paul" and he just pointed to the number displayed up above. It was for the second floor, not the first. I laughed and thanked Paul for staying cognizant of his surroundings. He noticed that despite his headache and use of only one eye! I told him he might want to ask for a more alert caregiver, and at the very least, continue to remain ever watchful!
I took notice of the fact that he kept up his endurance the whole morning, which indicates that once we get past these headache/shunt issues, he should be able to regain his strength fairly quickly.
We have another event for the day and that is a trip to the hospital to pick up his xray copies and then to the appointment to get his cat scan done for tomorrow's appointment with the neurologist. Please pray that the shunt has not overdrained the ventricle, as that will be a really big problem. It is more preferable that the shunt is not draining enough brain fluid.
I had a thought yesterday that we are just one day closer to the recovery God intends and I am one day closer to my seeing Jesus as I pass from this world to the next. So much to pray for and do...............so little time! Instead of dreading the long waits, I will look forward to utilizing that time to pray without ceasing.
Psalm 89 from today's readings.
The favors of the Lord I will sing forever;
through all generations my mouth shall proclaim your faithfulness.
For you have said, "My kindness is established forever";
in heaven you have confirmed your faithfulness.
The heavens proclaim your wonders, O Lord
and your faithfulness, in the assembly of the holy ones.
For who in the skies can rank with the Lord?
Who is like the Lord among the sons of God?
Blessed the people who know the joyful shout;
in the light of your countenance, O Lord they walk.
At your name they rejoice all the day,
and through your justice they are exalted.
Forever I will sing the goodness of the Lord.
We place our trust in you, Jesus.
Peace to all,
Jon and Rebecca
Monday, April 24, 2006
Anticipation
Last week was certainly one of the harder ones to get through. There were no 'mile markers' for us to see that we were making some progress. I had to keep more of a bird's eye view of all this to keep my hopes up, as we were moving forward at a snail's pace. Paul has had one continuous headache and only Lortab has relieved it. This makes him very tired, which in turn keeps him from eating. On Friday, he asked for a roast beef sandwich and I brought it to him, happy he had actually asked for food. He picked it up and took one bite. Before he finished swallowing it, he had fallen asleep. I had to wake him to finish that and he sat with the sandwich iin his hand for a moment, then I realized he had fallen asleep again. I have had to depend on tube feedings for the last 5 days, and am thankful we have it. He is down to 123 lbs and needs to at least maintain this weight. He is very weakened since he has only been out of bed to use the restroom and get daily showers. When we try to get him to walk around, he has been very irritable. Jon was able to get him to walk down the street a little way. He told Paul how important it was to keep trying to move and Paul said he would love to, if his head weren't hurting so bad. It is not that Paul doesn't want to then, it is because of the intense pain.
We also have had to use the 2 casts for his legs, as he was very stiff when he did try to walk on Thursday. What a great blessing I did not let Shepherd Center throw them away when we were leaving in January! As we look forward, it is sometimes so hard to see the forest for the trees, but in hindsight, God's hand is sometimes so clear. I draw strength from the knowledge that He has lead us through so many tough times, providing relief just when we need it. This has been a really difficult week for me, as I have watched Paul laying in bed everyday, not much stronger than his second week at Shepherd Center (with a lot less activity). He isn't even talking anymore and basically communicates with sign language again. I asked him why he doesn't want to speak the words and he just points to his head.
Yes, a very bleak week. But God has a great sense of humor. As I was driving I saw a sign in front of a church with this message - WHEN DESPAIR AND HOPELESSNESS KNOCKS ON YOUR DOOR, LET JESUS ANSWER IT. I smiled and then asked Jesus to stay in the car with me, because Satan has been knocking on our door all week and I could use the help getting rid of him and his friends, Despair and Hopelessness. And it worked - I kid you not. On Saturday, Jon and I really wanted to go to Reconciliation before Divine Mercy Sunday. The weather was perfect for our plan. We got Paul into the van, and brought a pillow. When we got to church, we had him lay the seat down, and we opened all the windows and he was able to sleep. We could see the van as we stood in line inside the church, so we could keep an eye on him. We got there early enough so that we were only 3rd in line! When we were leaving, we got to see 4 of our friends from St. Stephen's - Patty Palmquist, Joe Fumei, Patty Doman (we sponsored her in RCIA last year) and Gloria. We got to visit with them for a few minutes outside and it was so wonderful being with friends for those moments. The gift of grace from the Sacrament of Reconciliation and the gift of friendship...........a one-stop shop! This whole thing really lifted our spirits and we went home very lighthearted. I knew Jesus helped us in our need for hope to be restored.
We tried to get Paul to join us out on the deck, but he wanted to be back in bed. After we got him settled, we sat on the front porch and watched a family of birds being tended in a nest that is in a planter about 3 feet away from the rocking chairs. We sat very still and after they made sure we weren't going to disturb them, the mother and father kept flying in and out, getting food to the baby birds in the nest. It was so fascinating watching the 2 adult birds coordinate their actions. What impressed Jon and I both was how the one bird would stay in the Dogwood tree, on a branch overhead and would chirp the whole time the other one got food to the babies. We realized that it was to distract other birds who might bring harm. Since the babies start to chirp when the food is brought to the doorway, the lookout bird chirps loudly so it drowns out the sound of the babies. Equally amazing is that Jon and I were so much at peace, that we were able to NOTICE all this. We had a full hour of being able to marvel at the sights and sounds of nature in front of us. All for free!
We had to split up for Mass times. I went to the earliest Mass at St. John Neumann and Jon and Michael went to St. Stephen's at the next Mass. Jon brought Communion to Paul, as we do every week. I felt more peace as we prayed together, knowing God heard our prayers and in His time and in His way, recovery will occur. I didn't feel the deep sadness I had felt this past week as I looked at Paul, thin and weak, laying so still in his bed. God showed His hand on Saturday and His grace continues to flow like a river. I was correct about that, because in the afternoon at 3:00 P.M. there was going to be a service for Divine Mercy Sunday at St. Stephen's. Jon and I had prayed the nine day novena prayers of Divine Mercy and we had hoped Paul would be well enough to attend. He did ......in the same way he was with us at Reconciliation. He had to stay laying down in the car, but we parked in the handicap space right outside the door and we prayed inside, while Paul was right outside. (Both times, he had his cell phone in his hand and could call us if ne needed us. Jon had the number dialed and all Paul needed to do was press TALK.) He was very comfortable in the van, as a breeze was blowing and the temperature was perfect. If the weather had not been this perfect, we would not have attempted this!
Our friend Joe Fumei gave Paul an Enrollment card for the Archconfraternity of Our Mother of Perpetual Help and St. Alphonsus, and he will share in all the benefits thereof. This will include daily masses for his healing. The picture of Mother of Perpetual Help brought back the memory of the picture my parents had in our home since I was a baby. It is still with my mother. When I was younger, my parents took us to the Tuesday night devotions to Mother of Perpetual Help. When that was no longer possible, my mother prayed the prayers of devotion every Tuesday anyway. To this day, she continues this practice. What beautiful prayers they are, with the promise of Mary's intercession before God. What a wonderful Grandmother Paul has - praying for her children and grandchildren all these years!
"Mother of Perpetual Help, today we face so many difficulties.
Your picture tells us so much about you. It reminds us to reach out and
help those in need. Help us understand that our lives belong to others
as much as they belong to us.
Mary, we know we cannot heal every ill or solve every problem. But with God's
grace, we intend to do what we can. May we be true witnesses to the world
that love for one another really matters. May our daily actions proclaim
how fully our lives are modeled after yours, Mother of Perpetual Help."
About anticipation...............we will be seeing the neurologist today to see if they are going to adjust the shunt. We also see the eye specialist on Tuesday at Emory. God helped me with the timing of that appointment, to be sure. I called in last week to see if the referral to this doctor had been made. It had not and the next available appointment would not be until June. I said that we would have to take that one, but then the receptionist said they had just received a cancellation for an appointment on Tuesday and could we make that? Thanks be to God, we might be able to get something done to help Paul get rid of that patch and a better way to protect the cornea! So, with hopeful anticipation we start with Divine Mercy Sunday and walk forward into this week, as we continue to pray, Jesus, We Trust In You.
Reading from the Magnificat on Monday 4/24 (Isaiah 30: 19-21)
He will be gracious to you when you cry out.
The Lord will give you the bread you need and the water for
which you thirst. No longer will your Teacher hide himself, but
with your own eyes you shall see your Teacher, while from behind,
a voice shall sound in your ears: "This is the way; walk in it,"
when you would turn to the right or to the left.
Peace in the Risen Christ,
Jon and Rebecca
We also have had to use the 2 casts for his legs, as he was very stiff when he did try to walk on Thursday. What a great blessing I did not let Shepherd Center throw them away when we were leaving in January! As we look forward, it is sometimes so hard to see the forest for the trees, but in hindsight, God's hand is sometimes so clear. I draw strength from the knowledge that He has lead us through so many tough times, providing relief just when we need it. This has been a really difficult week for me, as I have watched Paul laying in bed everyday, not much stronger than his second week at Shepherd Center (with a lot less activity). He isn't even talking anymore and basically communicates with sign language again. I asked him why he doesn't want to speak the words and he just points to his head.
Yes, a very bleak week. But God has a great sense of humor. As I was driving I saw a sign in front of a church with this message - WHEN DESPAIR AND HOPELESSNESS KNOCKS ON YOUR DOOR, LET JESUS ANSWER IT. I smiled and then asked Jesus to stay in the car with me, because Satan has been knocking on our door all week and I could use the help getting rid of him and his friends, Despair and Hopelessness. And it worked - I kid you not. On Saturday, Jon and I really wanted to go to Reconciliation before Divine Mercy Sunday. The weather was perfect for our plan. We got Paul into the van, and brought a pillow. When we got to church, we had him lay the seat down, and we opened all the windows and he was able to sleep. We could see the van as we stood in line inside the church, so we could keep an eye on him. We got there early enough so that we were only 3rd in line! When we were leaving, we got to see 4 of our friends from St. Stephen's - Patty Palmquist, Joe Fumei, Patty Doman (we sponsored her in RCIA last year) and Gloria. We got to visit with them for a few minutes outside and it was so wonderful being with friends for those moments. The gift of grace from the Sacrament of Reconciliation and the gift of friendship...........a one-stop shop! This whole thing really lifted our spirits and we went home very lighthearted. I knew Jesus helped us in our need for hope to be restored.
We tried to get Paul to join us out on the deck, but he wanted to be back in bed. After we got him settled, we sat on the front porch and watched a family of birds being tended in a nest that is in a planter about 3 feet away from the rocking chairs. We sat very still and after they made sure we weren't going to disturb them, the mother and father kept flying in and out, getting food to the baby birds in the nest. It was so fascinating watching the 2 adult birds coordinate their actions. What impressed Jon and I both was how the one bird would stay in the Dogwood tree, on a branch overhead and would chirp the whole time the other one got food to the babies. We realized that it was to distract other birds who might bring harm. Since the babies start to chirp when the food is brought to the doorway, the lookout bird chirps loudly so it drowns out the sound of the babies. Equally amazing is that Jon and I were so much at peace, that we were able to NOTICE all this. We had a full hour of being able to marvel at the sights and sounds of nature in front of us. All for free!
We had to split up for Mass times. I went to the earliest Mass at St. John Neumann and Jon and Michael went to St. Stephen's at the next Mass. Jon brought Communion to Paul, as we do every week. I felt more peace as we prayed together, knowing God heard our prayers and in His time and in His way, recovery will occur. I didn't feel the deep sadness I had felt this past week as I looked at Paul, thin and weak, laying so still in his bed. God showed His hand on Saturday and His grace continues to flow like a river. I was correct about that, because in the afternoon at 3:00 P.M. there was going to be a service for Divine Mercy Sunday at St. Stephen's. Jon and I had prayed the nine day novena prayers of Divine Mercy and we had hoped Paul would be well enough to attend. He did ......in the same way he was with us at Reconciliation. He had to stay laying down in the car, but we parked in the handicap space right outside the door and we prayed inside, while Paul was right outside. (Both times, he had his cell phone in his hand and could call us if ne needed us. Jon had the number dialed and all Paul needed to do was press TALK.) He was very comfortable in the van, as a breeze was blowing and the temperature was perfect. If the weather had not been this perfect, we would not have attempted this!
Our friend Joe Fumei gave Paul an Enrollment card for the Archconfraternity of Our Mother of Perpetual Help and St. Alphonsus, and he will share in all the benefits thereof. This will include daily masses for his healing. The picture of Mother of Perpetual Help brought back the memory of the picture my parents had in our home since I was a baby. It is still with my mother. When I was younger, my parents took us to the Tuesday night devotions to Mother of Perpetual Help. When that was no longer possible, my mother prayed the prayers of devotion every Tuesday anyway. To this day, she continues this practice. What beautiful prayers they are, with the promise of Mary's intercession before God. What a wonderful Grandmother Paul has - praying for her children and grandchildren all these years!
"Mother of Perpetual Help, today we face so many difficulties.
Your picture tells us so much about you. It reminds us to reach out and
help those in need. Help us understand that our lives belong to others
as much as they belong to us.
Mary, we know we cannot heal every ill or solve every problem. But with God's
grace, we intend to do what we can. May we be true witnesses to the world
that love for one another really matters. May our daily actions proclaim
how fully our lives are modeled after yours, Mother of Perpetual Help."
About anticipation...............we will be seeing the neurologist today to see if they are going to adjust the shunt. We also see the eye specialist on Tuesday at Emory. God helped me with the timing of that appointment, to be sure. I called in last week to see if the referral to this doctor had been made. It had not and the next available appointment would not be until June. I said that we would have to take that one, but then the receptionist said they had just received a cancellation for an appointment on Tuesday and could we make that? Thanks be to God, we might be able to get something done to help Paul get rid of that patch and a better way to protect the cornea! So, with hopeful anticipation we start with Divine Mercy Sunday and walk forward into this week, as we continue to pray, Jesus, We Trust In You.
Reading from the Magnificat on Monday 4/24 (Isaiah 30: 19-21)
He will be gracious to you when you cry out.
The Lord will give you the bread you need and the water for
which you thirst. No longer will your Teacher hide himself, but
with your own eyes you shall see your Teacher, while from behind,
a voice shall sound in your ears: "This is the way; walk in it,"
when you would turn to the right or to the left.
Peace in the Risen Christ,
Jon and Rebecca
Friday, April 21, 2006
Easter Pictures
James and PFiddy
Michael, Jon and James (and what a joy it will be when Paul is standing with them!)
Kelly, Keith and Griffin (son)
Many family members gathered to celebrate Kelly's Baptism, First Communion and Confirmation at the Easter Vigil Mass
Thursday, April 20, 2006
ZZZZZZzzzzzzzzzzzzzz.............
Thursday Night
It has become obvious that I still have a lot to learn about the recovery of the surgeries and hydrocepholus itself. When we brought Paul home on Sunday, I thought he would be up and about within a few days. His headaches continued and he spends most of the day sleeping. I called the doctor's office to get a better idea of the parameters of what we should expect and found out that he will experience pain from the surgery and that the headaches could actually be present for a couple of months. I also found out that I can give him the prescription pain medication without fear of his becoming addicted, which was a huge concern of mine. I was not sure how much he could take without an addiction problem being added to our list, so I was basically depending on Tylenol to help with his headache pain. I was told that with all the surgeries he had, that he didn't really have the strength to deal with the pain, and that he needed the stronger pain medication to allow him to rest better. I started to give him the pain medication yesterday and he slept much better and longer and his face reflected it this morning. When he was awake today, he had a good appetite, and actually started today to have small conversations, which he had not done since last week. I was getting so worried about his irritability and his not talking, just using the sign language he used early on in his recovery. I could not believe we were regressing so badly! I have been so tired also, because he was waking every 2 hours throughout the night to use the restroom or ask for medication. Last night he slept for 5 hours straight and this morning, woke up so much more refreshed. I would estimate that he improved a good 15% over yesterday. He has had 3 good meals today and even got up on his own and came downstairs to see what he could have for lunch. He is not able to sit up for more than a few minutes, then his head hurts again. Later this afternoon while talking to our doctor's nurse, I found out that that can be common - headaches for a couple weeks to months after the shunt is put in. With the 3 surgeries in 4 weeks, he is going to be really sore.
I started to try to get more research done about this condition that will be with Paul for life. At first, I was almost afraid to look. I had the same feeling as when I first searched the internet to get more information about brain injuries. It was a very frightening thing to read about all the problems associated with Paul's injury and I really didn't have the strength to read about it in that first month. I was working hard to handle the fact that he might die, or might not come out of the coma for months and all the problems that would incur. I remember so vividly, walking the hallways and realizing I had not taken a breath and then telling myself to just breathe. The last thing I wanted to do was see all the things that could become complications! Ignorance is sometimes truly Bliss. And that is how I felt when I heard that Paul had hydrocephalus. At first, I didn't realize at all what it meant. It seemed simple enough - drain it and move on. As the complications arose, I realized we had to know all about it to help Paul live with it. Plus, it would help us ask questions that were more timely and important. After talking to Kelly, she put in a lot of hours and sent me a number of very helpful sites. I have to admit, it will be in our best interest to learn as much as we can, so we can find good doctors to keep us on track with Paul's recovery and also to find others who have helpful hints that will possibly help us avoid some pitfalls. Of course, I will probably have to say my prayer "Jesus, I trust in you" a couple hundred more times a day as I read through all these articles. Some of it sounds pretty scary. But as I reminded myself today - God brought it to us, He will bring us through it. We were able to get some very good referrals and are in the process of getting a neurologist who can give us a second opinion. We still have all the confidence in our neurosurgeon. But with something this serious, we thought it best to at least get a second opinion from a doctor who also specializes in the treatment of hydrocephalus. Paul has a follow up appointment with our doctor on Monday. That will give us a better idea how well this programmable shunt is working. It is hard to know if the headaches are from the surgeries or the amount of fluid in the ventricles. I pray we don't have a long road finding the solution to this complicated problem.
I am waiting to hear whether I will be able to work something out with my job. They need me to be able to work by the end of April, or the position will need to be filled by someone else. It is my hope that they will approve my working from home for a period of time. My understanding is that if this is approved, it will be for a short amount of time, then I would have to come back and work in the office. We will then have to find someone to stay in our home with Paul, depending on his condition. He will hopefully be in rehab by that time, so that we might need someone only on a part time basis. I am praying for God's guidance in all of this and ask you to pray for me to know His will.
I will try to post some of the pictures taken of the Easter Vigil. Everyone looks so joyous - it helped us feel their joy also. I wanted to do a posting sooner, but have been literally wiped out these past few days due to lack of sleep. This evening ended a restful day, and I have had the added benefit of the sound of the rain falling softly as I typed this. (If Michael didn't suffer so badly from allergies, the windows would be opened just a crack, so the fresh smell could float in also!) Just as the rain washes everything clean, the image of Jesus in the Divine Mercy picture above me reminds me that the pale color represents the water that flowed from His heart when pierced as He hung on the cross. It is a reminder of the Water that makes souls righteous, through Baptism and in reality, the merciful fountain of grace flowing from the pierced heart of Christ on the Cross. How abundant that mercy is, which is offered to everyone. Seek and you shall find!
With not much in the way of big news these last few days to post for you to read - guess you are all about ready to ZZZZZZzzz about now.................smile.
Goodnight and love to everyone,
Jon and Rebecca
It has become obvious that I still have a lot to learn about the recovery of the surgeries and hydrocepholus itself. When we brought Paul home on Sunday, I thought he would be up and about within a few days. His headaches continued and he spends most of the day sleeping. I called the doctor's office to get a better idea of the parameters of what we should expect and found out that he will experience pain from the surgery and that the headaches could actually be present for a couple of months. I also found out that I can give him the prescription pain medication without fear of his becoming addicted, which was a huge concern of mine. I was not sure how much he could take without an addiction problem being added to our list, so I was basically depending on Tylenol to help with his headache pain. I was told that with all the surgeries he had, that he didn't really have the strength to deal with the pain, and that he needed the stronger pain medication to allow him to rest better. I started to give him the pain medication yesterday and he slept much better and longer and his face reflected it this morning. When he was awake today, he had a good appetite, and actually started today to have small conversations, which he had not done since last week. I was getting so worried about his irritability and his not talking, just using the sign language he used early on in his recovery. I could not believe we were regressing so badly! I have been so tired also, because he was waking every 2 hours throughout the night to use the restroom or ask for medication. Last night he slept for 5 hours straight and this morning, woke up so much more refreshed. I would estimate that he improved a good 15% over yesterday. He has had 3 good meals today and even got up on his own and came downstairs to see what he could have for lunch. He is not able to sit up for more than a few minutes, then his head hurts again. Later this afternoon while talking to our doctor's nurse, I found out that that can be common - headaches for a couple weeks to months after the shunt is put in. With the 3 surgeries in 4 weeks, he is going to be really sore.
I started to try to get more research done about this condition that will be with Paul for life. At first, I was almost afraid to look. I had the same feeling as when I first searched the internet to get more information about brain injuries. It was a very frightening thing to read about all the problems associated with Paul's injury and I really didn't have the strength to read about it in that first month. I was working hard to handle the fact that he might die, or might not come out of the coma for months and all the problems that would incur. I remember so vividly, walking the hallways and realizing I had not taken a breath and then telling myself to just breathe. The last thing I wanted to do was see all the things that could become complications! Ignorance is sometimes truly Bliss. And that is how I felt when I heard that Paul had hydrocephalus. At first, I didn't realize at all what it meant. It seemed simple enough - drain it and move on. As the complications arose, I realized we had to know all about it to help Paul live with it. Plus, it would help us ask questions that were more timely and important. After talking to Kelly, she put in a lot of hours and sent me a number of very helpful sites. I have to admit, it will be in our best interest to learn as much as we can, so we can find good doctors to keep us on track with Paul's recovery and also to find others who have helpful hints that will possibly help us avoid some pitfalls. Of course, I will probably have to say my prayer "Jesus, I trust in you" a couple hundred more times a day as I read through all these articles. Some of it sounds pretty scary. But as I reminded myself today - God brought it to us, He will bring us through it. We were able to get some very good referrals and are in the process of getting a neurologist who can give us a second opinion. We still have all the confidence in our neurosurgeon. But with something this serious, we thought it best to at least get a second opinion from a doctor who also specializes in the treatment of hydrocephalus. Paul has a follow up appointment with our doctor on Monday. That will give us a better idea how well this programmable shunt is working. It is hard to know if the headaches are from the surgeries or the amount of fluid in the ventricles. I pray we don't have a long road finding the solution to this complicated problem.
I am waiting to hear whether I will be able to work something out with my job. They need me to be able to work by the end of April, or the position will need to be filled by someone else. It is my hope that they will approve my working from home for a period of time. My understanding is that if this is approved, it will be for a short amount of time, then I would have to come back and work in the office. We will then have to find someone to stay in our home with Paul, depending on his condition. He will hopefully be in rehab by that time, so that we might need someone only on a part time basis. I am praying for God's guidance in all of this and ask you to pray for me to know His will.
I will try to post some of the pictures taken of the Easter Vigil. Everyone looks so joyous - it helped us feel their joy also. I wanted to do a posting sooner, but have been literally wiped out these past few days due to lack of sleep. This evening ended a restful day, and I have had the added benefit of the sound of the rain falling softly as I typed this. (If Michael didn't suffer so badly from allergies, the windows would be opened just a crack, so the fresh smell could float in also!) Just as the rain washes everything clean, the image of Jesus in the Divine Mercy picture above me reminds me that the pale color represents the water that flowed from His heart when pierced as He hung on the cross. It is a reminder of the Water that makes souls righteous, through Baptism and in reality, the merciful fountain of grace flowing from the pierced heart of Christ on the Cross. How abundant that mercy is, which is offered to everyone. Seek and you shall find!
With not much in the way of big news these last few days to post for you to read - guess you are all about ready to ZZZZZZzzz about now.................smile.
Goodnight and love to everyone,
Jon and Rebecca
Tuesday, April 18, 2006
We Gotta Get Out of This Place
We sat for hours before the ER doctor was able to see Paul. She checked him and then said she was going to see if our neurosurgeon was still at the hospital. AFter she left the room, Paul asked "What are they going to do to me?" While I felt sad that Paul was feeling real concern over what might happen, it was good to see that he was very aware of his surroundings. Luckily for us, the neurosurgeon was still in the hospital. He had just finished surgery. After looking at Paul, he said he was fine and asked us if we remembered after the first reconstructive surgery how swollen Paul's head was. Before we could answer he smiled and said "I don't suppose you did since he had all those tubes in him." (I think he quickly realized those were very tense days back then!) He then said he was so sorry we had been put through all this and explained that the type of surgery done usually causes fluid to settle around the forehead and just under the scalp. It builds over 3 days and then the body absorbs it over the next 3 days. With Paul laying down so much and not at a higher angle as he was in the hospital, it is more prominent. If he were to sit up for a long enough time, it would be less noticeable. He asked if we had called his office and I said that is why we were at the ER. The nurse told us he was in surgery at the time and to go to the ER. He said that since he was unavailable, she did the next best thing, and again apologized to us for the fact that we had to go to all this trouble and for the scare it caused us. He said the incisions looked very clean and Paul was free to go home. Music to our ears! The only other words Paul spoke the entire evening was "Let's get out of here." He said this as he was pulling the blanket off! There was no guessing how Paul felt at that moment! 15 minutes later we were in the car heading home.
We arrived home just before Michael got in from Chicago, so it was easy to fall asleep, knowing that he was home also and that everyone else had made it back safely from that trip.
At least we can hopefully enjoy Jon's last day of vacation together at home. We will try again tonight to get Paul that grilled steak dinner he asked for!
Thank you for your concern and prayers. While we didn't mean to scare anyone, we have come to really depend on the fact that prayers have helped us immensely in these past 5 months and I can't imagine being without that 'safety net'! How wonderful that God has provided us with the awesome Power of Prayer.
Love to all our PRAYER FAN CLUB (as noted in the comments...........smile)
Jon and Rebecca
We arrived home just before Michael got in from Chicago, so it was easy to fall asleep, knowing that he was home also and that everyone else had made it back safely from that trip.
At least we can hopefully enjoy Jon's last day of vacation together at home. We will try again tonight to get Paul that grilled steak dinner he asked for!
Thank you for your concern and prayers. While we didn't mean to scare anyone, we have come to really depend on the fact that prayers have helped us immensely in these past 5 months and I can't imagine being without that 'safety net'! How wonderful that God has provided us with the awesome Power of Prayer.
Love to all our PRAYER FAN CLUB (as noted in the comments...........smile)
Jon and Rebecca
Monday, April 17, 2006
Minute By Minute By Minute By Minute.......
Jon had taken last Thursday through tomorrow as vacation days in anticipation of the trip we had hoped to take to Chicago. It has turned out to be a huge blessing in that I had help with Paul's hospital stay Good Friday through Easter Sunday. And also, he is here to help me again tonight. We are back in the Emergency Room where there is a very full house. We have been blessed in that they found a bed for Paul to use, due to his condition. We are not sure what is wrong, but late this afternoon I noticed that his forehead was protruding and there seemed to be fluid accumulating under his scalp. I called the neurosurgen's office, and spoke to the nurse. She said the doctor was in surgery and that we needed to get Paul to the ER to be seen. He is not in any more pain than before, but there is an apparent complication after his last surgery. He thankfully is sleeping through this wait. We are again praying. Thank goodness we had some time to rest yesterday!
Since Jon was home today, I was able to go to the office where I work and visit with so many of my friends there. It was so wonderful to hug them and be hugged! I went by my desk and the first thing I noticed was the large picture I have of my 4 sons that was taken a year ago at Christmas. How joyous their faces were and my prayer is that Paul will be smiling like that again really soon. It still amazes me how quickly our lives changed, but I still hold on to the belief that since God allowed this to happen to us, He will bring us through this. We have just come to another speed bump on our 5 m.p.h. road to California!
Please pray that this will be a problem easily resolved and that we can bring Paul home quickly. This is the 4th hospital stay since 3/23 and he could sure use longer stays at home to build up his strength and endurance. Me too..............smile.
I imagine Jon will be very hesitant to schedule more vacation time!
Thank you for the time you have all spent in prayer for Paul and our family. I know they are answered according to God's will and they surely are what helps us keep our faith as we watch it all unfold!
Peace in the Risen Lord,
Jon and Rebecca
Since Jon was home today, I was able to go to the office where I work and visit with so many of my friends there. It was so wonderful to hug them and be hugged! I went by my desk and the first thing I noticed was the large picture I have of my 4 sons that was taken a year ago at Christmas. How joyous their faces were and my prayer is that Paul will be smiling like that again really soon. It still amazes me how quickly our lives changed, but I still hold on to the belief that since God allowed this to happen to us, He will bring us through this. We have just come to another speed bump on our 5 m.p.h. road to California!
Please pray that this will be a problem easily resolved and that we can bring Paul home quickly. This is the 4th hospital stay since 3/23 and he could sure use longer stays at home to build up his strength and endurance. Me too..............smile.
I imagine Jon will be very hesitant to schedule more vacation time!
Thank you for the time you have all spent in prayer for Paul and our family. I know they are answered according to God's will and they surely are what helps us keep our faith as we watch it all unfold!
Peace in the Risen Lord,
Jon and Rebecca
Saturday, April 15, 2006
Be Thou My Vision
Paul's surgery went quickly and now it is a matter of time to see if it will solve the problem of the brain fluid pressure. We spent Saturday in his room, watching and praying for signs of improvement. We have continued the Divine Mercy Novena, which is such a wonderful gift from Jesus to St. Faustina, then made known to the world through Pope John Paul II.
It was very strange to spend the first Good Friday and Holy Saturday away from all the services at church, but I realized that we must be meant to pray for all those who were also not able to be with family and friends. There was so much time to reflect on how much others suffer in this world and that while we weren't able to be away from the hospital, we were surrounded by the prayers of those who love and care about us. What consolation and joy that knowledge brought us.
One thing that really struck us again was the amount of caring offered by the pre-op staff. One of the nurses took a special interest in Paul and talked to us about him. As we shared some of what he has endured, she started to cry and said it was a beautiful story and she was glad to hear that he is recovering. She said that he has such a beautiful face (which we see too, beyond the eye patch and scarred head)! All I see anymore is his gentle demeaner. Once again, a complete stranger taking the time to really care for our son. God continues to show His love through others!
Saturday afternoon, Paul woke up and was hungry. We knew his dinner would be coming fairly soon, so Jon and I quickly went to the cafeteria to get some food, so we could all eat together. We got back to the room and Paul smelled the food and asked where his dinner was. Jon cut his hamburger in half, since Paul's was hopefully on its way. Paul ate it quickly, and then asked where the other half was. Jon felt so bad when he had to say, "I ate the other half. I thought your hamburger would be here by now." So, Paul ate all of Jon's french fries. By this time, his own dinner was delivered. Paul ate the entire hamburger, but let Jon have the french fries!
We thought about going to the Easter Vigil at St. Stephen's but Paul did not want to be left alone for that long. It would be about 4 hours before we could get back to the hospital. We decided on going to the 8:30 A.M. Mass, with the hopes that Paul would be released Sunday morning. I stayed the night with Paul and we watched the special about the last days of Pope John Paul II. As I was watching (through tear filled eyes, I have to admit) I again remembered that Paul had worn the zachetto of Pope John Paul II back in November when wonderful Fr. Kevin Peek brought it with him when he said Mass that night. I sat quietly describing it all to Paul and he said he remembered being told that. (That was a good sign that he had remembered something from weeks ago.) He watched very intently, most of the program. Finally, when there was only about 15 minutes to go, he said he was sorry and asked if I could turn the TV off. He said he knew that I wanted to finish watching, but he had a very bad headache. It is hard for Paul to have noise for long periods of time, as his brain tires very quickly. He actually surprised me with how long he watched this program. I took care of his eye for the night, then he fell asleep.
I noticed the time and it was when the Easter Vigil would begin for Kelly, who was going to be baptized. I read through some of the readings to be with everyone in spirit, but actually alternated thinking about Kelly and all my sons and family in Chicago celebrating this joyous event and also the last days of my father's death. Four years ago he was in the hospital all of Holy Week, and he died Easter at sunrise. I went to some of the services for him and then shared it by telling him all about them. I spent the nights with him and we had long and wonderful conversations. I remembered his telling me on Holy Thursday how afraid he was that night. We knew he was going to die soon and he was very afraid and wondered how it was going to be. All I could think to tell him was that he would leave the loving hands of his family, then straight into the hands of Jesus, accompanied by the Blessed Mary. How much more wonderful could that be? Picturing that still makes me vow over again that I will try to live as holy as I can, so that I may be graced with eternal life in heaven. I also sat reflecting for a long time about this Lenten season and how after seeing "The Passion of the Christ" I had a much more vivid visual aid into what Jesus suffered for us. All so that we COULD leave this world and then be in His loving hands. Having watched Paul suffer all these days of Lent brought an even more personal glimpse into the love being offered to us all by Jesus. So often I have meditated on how we have been blessed to actually 'feel' some of the suffering endured by Jesus and His most Blessed Mother. To be allowed to partake in a minute portion of that has helped me to rejoice with a greater joy as I thought about all those who were being baptized at the Easter Vigil Masses being said all over the world, most especially Kelly.(I spent about an hour talking on the phone to the family after the Mass - it was my way of sharing in the joy of the night!)
How I long for the conversions of those who don't know of the love being offered in great abundance by God our Father, through His Son Jesus, Our Saviour. I saw the emptiness of those who suffer alone, while we waited in the hospital for Paul to come out of surgery. There was a family there who obviously was suffering over the injury of a loved one. I did not know their circumstances and when the chaplain of the hospital saw Jon and me, she came in and told that family that they might find some hope in our story. I introduced myself to them and as I was sharing some of the things about Paul, it quickly became apparent they did not really want to hear it, nor did they want to talk to us. I politely ended the conversation with a sincere wish that all would go well for them. Most of them stood up and left the room. I felt such incredible sadness for them, knowing that they must be in so much pain over the turn of events in their life. I then immediately thanked God for allowing us to know He was with us in all these days since the accident and that with the loving intercession of the Blessed Mother and saints in heaven, we would be given everything we needed to go forth and walk closer in line with Him. I had felt that power of His love immediately that first day and I remain so grateful for all the people who came to our aid - strangers included! In fact, it was the love and concern shared by complete strangers that impressed me the most. It was a vivid sign of God's love for His children, working through others. Jon and I prayed wholeheartedly for this family that was suffering so much. I can honestly say, I do remember the intense pain of that first week. But not in horror. Because in hindsight, it has brought us to a relationship with God that I would not ever trade away. All the pain has been worth the increased awareness of God's glory, which is bursting forth on this Glorious Easter day.
We are home and Paul is sleeping soundly. All of the flowers and azaleas are bursting with color and the breeze is gently blowing across the porch. All is right in God's world and if you look, it is easy to see and share in it. We will use today to shore up our strength for what tomorrow brings.
A blessed and glorious Easter to everyone and welcome Kelly, our dear Sister In Christ!
Love,
Jon and Rebecca
It was very strange to spend the first Good Friday and Holy Saturday away from all the services at church, but I realized that we must be meant to pray for all those who were also not able to be with family and friends. There was so much time to reflect on how much others suffer in this world and that while we weren't able to be away from the hospital, we were surrounded by the prayers of those who love and care about us. What consolation and joy that knowledge brought us.
One thing that really struck us again was the amount of caring offered by the pre-op staff. One of the nurses took a special interest in Paul and talked to us about him. As we shared some of what he has endured, she started to cry and said it was a beautiful story and she was glad to hear that he is recovering. She said that he has such a beautiful face (which we see too, beyond the eye patch and scarred head)! All I see anymore is his gentle demeaner. Once again, a complete stranger taking the time to really care for our son. God continues to show His love through others!
Saturday afternoon, Paul woke up and was hungry. We knew his dinner would be coming fairly soon, so Jon and I quickly went to the cafeteria to get some food, so we could all eat together. We got back to the room and Paul smelled the food and asked where his dinner was. Jon cut his hamburger in half, since Paul's was hopefully on its way. Paul ate it quickly, and then asked where the other half was. Jon felt so bad when he had to say, "I ate the other half. I thought your hamburger would be here by now." So, Paul ate all of Jon's french fries. By this time, his own dinner was delivered. Paul ate the entire hamburger, but let Jon have the french fries!
We thought about going to the Easter Vigil at St. Stephen's but Paul did not want to be left alone for that long. It would be about 4 hours before we could get back to the hospital. We decided on going to the 8:30 A.M. Mass, with the hopes that Paul would be released Sunday morning. I stayed the night with Paul and we watched the special about the last days of Pope John Paul II. As I was watching (through tear filled eyes, I have to admit) I again remembered that Paul had worn the zachetto of Pope John Paul II back in November when wonderful Fr. Kevin Peek brought it with him when he said Mass that night. I sat quietly describing it all to Paul and he said he remembered being told that. (That was a good sign that he had remembered something from weeks ago.) He watched very intently, most of the program. Finally, when there was only about 15 minutes to go, he said he was sorry and asked if I could turn the TV off. He said he knew that I wanted to finish watching, but he had a very bad headache. It is hard for Paul to have noise for long periods of time, as his brain tires very quickly. He actually surprised me with how long he watched this program. I took care of his eye for the night, then he fell asleep.
I noticed the time and it was when the Easter Vigil would begin for Kelly, who was going to be baptized. I read through some of the readings to be with everyone in spirit, but actually alternated thinking about Kelly and all my sons and family in Chicago celebrating this joyous event and also the last days of my father's death. Four years ago he was in the hospital all of Holy Week, and he died Easter at sunrise. I went to some of the services for him and then shared it by telling him all about them. I spent the nights with him and we had long and wonderful conversations. I remembered his telling me on Holy Thursday how afraid he was that night. We knew he was going to die soon and he was very afraid and wondered how it was going to be. All I could think to tell him was that he would leave the loving hands of his family, then straight into the hands of Jesus, accompanied by the Blessed Mary. How much more wonderful could that be? Picturing that still makes me vow over again that I will try to live as holy as I can, so that I may be graced with eternal life in heaven. I also sat reflecting for a long time about this Lenten season and how after seeing "The Passion of the Christ" I had a much more vivid visual aid into what Jesus suffered for us. All so that we COULD leave this world and then be in His loving hands. Having watched Paul suffer all these days of Lent brought an even more personal glimpse into the love being offered to us all by Jesus. So often I have meditated on how we have been blessed to actually 'feel' some of the suffering endured by Jesus and His most Blessed Mother. To be allowed to partake in a minute portion of that has helped me to rejoice with a greater joy as I thought about all those who were being baptized at the Easter Vigil Masses being said all over the world, most especially Kelly.(I spent about an hour talking on the phone to the family after the Mass - it was my way of sharing in the joy of the night!)
How I long for the conversions of those who don't know of the love being offered in great abundance by God our Father, through His Son Jesus, Our Saviour. I saw the emptiness of those who suffer alone, while we waited in the hospital for Paul to come out of surgery. There was a family there who obviously was suffering over the injury of a loved one. I did not know their circumstances and when the chaplain of the hospital saw Jon and me, she came in and told that family that they might find some hope in our story. I introduced myself to them and as I was sharing some of the things about Paul, it quickly became apparent they did not really want to hear it, nor did they want to talk to us. I politely ended the conversation with a sincere wish that all would go well for them. Most of them stood up and left the room. I felt such incredible sadness for them, knowing that they must be in so much pain over the turn of events in their life. I then immediately thanked God for allowing us to know He was with us in all these days since the accident and that with the loving intercession of the Blessed Mother and saints in heaven, we would be given everything we needed to go forth and walk closer in line with Him. I had felt that power of His love immediately that first day and I remain so grateful for all the people who came to our aid - strangers included! In fact, it was the love and concern shared by complete strangers that impressed me the most. It was a vivid sign of God's love for His children, working through others. Jon and I prayed wholeheartedly for this family that was suffering so much. I can honestly say, I do remember the intense pain of that first week. But not in horror. Because in hindsight, it has brought us to a relationship with God that I would not ever trade away. All the pain has been worth the increased awareness of God's glory, which is bursting forth on this Glorious Easter day.
We are home and Paul is sleeping soundly. All of the flowers and azaleas are bursting with color and the breeze is gently blowing across the porch. All is right in God's world and if you look, it is easy to see and share in it. We will use today to shore up our strength for what tomorrow brings.
A blessed and glorious Easter to everyone and welcome Kelly, our dear Sister In Christ!
Love,
Jon and Rebecca
Friday, April 14, 2006
P.S.
The neurosurgeon has scheduled surgery tomorrow morning and Paul has been admitted to the hospital. They will replace the valve on his shunt with a programmable shunt in an effort to have better conrol over the amount of fluid that is drained from the ventricles of the brain.
We ask that you pray for the success of this procedure and the device itself.
We were able to begin the Novena of Divine Mercy at 3 P.M. today, which we considered to be a real blessing. There was no activity in this ER room and it was quiet. We are still waiting for a room and Paul has been given some pain medication that has allowed him to sleep without as much pain.
God bless,
Jon anad Rebecca
We ask that you pray for the success of this procedure and the device itself.
We were able to begin the Novena of Divine Mercy at 3 P.M. today, which we considered to be a real blessing. There was no activity in this ER room and it was quiet. We are still waiting for a room and Paul has been given some pain medication that has allowed him to sleep without as much pain.
God bless,
Jon anad Rebecca
Good Friday
Paul has continued with headaches since his surgery last week, but they started to get worse Thursday evening. We are back in the emergency room this morning. I prayed so much during the night, as I kept waking when I heard Paul move. He got up a number of times and was asking for pain medication. Each time I was awake, I prayed for the guidance and strength as we work towards Paul's recovery. Despair certainly describes one emotion felt during the night. I fought to keep praying through the stress I felt, seeking to find some peace in the knowledge that we are not alone 'in the darkness'.
We have been working this week to find a referral to another neurosurgeon, just to get a second opinion. In my research, it appears that shunts have complications of their own and are not always the immediate or perfect answer upon insertion. Also, the over drainage of the brain fluid, which is what has happened to Paul, is a harder problem to solve. Finding the right shunt and setting will be an issue. It appears we might have a longer road ahead than we thought. That is why we were hoping to get a second opinion as to the course of action that needs to be taken. We have prayed that we can avoid unnecessary procedures as they try to find an answer. Unfortunately, we have not been able to see anyone before Paul started back with more severe headaches. We and the doctor had hoped that the problem would not reoccur for at least a month, but in only one week, he is experiencing pain behind his eyes and in the front half of his head. The probable cause would be that the ventricles have again filled with too much brain fluid, causing pressure on the brain, which a shunt will have to relieve. Back to square one. I watched them take out the stitches today from last week's surgery and felt sad knowing that there will be more to come shortly.
As we were waiting in the ER, I looked at the readings for Good Friday. I won't deny that I will really miss being at any of the services today, as hoped. But reading through the scripture passages, it does not matter where we are. We are in union with the world over as we remember the sacrifice of Jesus, Our Saviour. Our day will be offered up to Him.
An sightful writing by Monsignor James Turro, "Seven Last Words" helped me hold onto the trust I cling to each day. He writes -
The Fourth Word:
"My God, My God, why have you forsaken me?"
These words, dear Jesus, taken as they stand, speak of a mind-numbing despair. But these are only the opening words of a psalm that is interpenetrated with hope, the psalm which goes on to say, and which you went on to pray: "In you our ancestors trusted; they trusted and you rescued them. To you they cried out and they escaped; in you they trusted and were not disappointed: (Ps22:5-6) In reality then, your mood must not have been one of despair but of unshakable trust. In your darkest hour, you expressed your deepest trust. You show to me and to all that "nothing makes us as great as sorrow: (Alfred de Musset).
And so we forge on, trusting that God is taking us where He wants us to be in this moment. Please pray that the medical staff will be able to find a final solution to this issue of the shunt and the complications that have ensued. I know the prayers will be heard and we will continue to wait patiently for God to bring us where He intends.
I end with this prayer -
"Lord, by shedding His blood for us, your Son, Jesus Christ,
established the paschal mystery. In your goodness, make us holy
and watch over us always. We ask this through Christ our Lord. Amen.
In thanksgiving to everyone who has helped us in all ways, we are eternally
grateful. We pray that you will come closer to God than ever before, as you continue your walk with Jesus each day you are graced with life.
Love,
Jon and Rebecca
(Hello Thomas Zieg! Tell your family hello - I have thought of you so often!)
We have been working this week to find a referral to another neurosurgeon, just to get a second opinion. In my research, it appears that shunts have complications of their own and are not always the immediate or perfect answer upon insertion. Also, the over drainage of the brain fluid, which is what has happened to Paul, is a harder problem to solve. Finding the right shunt and setting will be an issue. It appears we might have a longer road ahead than we thought. That is why we were hoping to get a second opinion as to the course of action that needs to be taken. We have prayed that we can avoid unnecessary procedures as they try to find an answer. Unfortunately, we have not been able to see anyone before Paul started back with more severe headaches. We and the doctor had hoped that the problem would not reoccur for at least a month, but in only one week, he is experiencing pain behind his eyes and in the front half of his head. The probable cause would be that the ventricles have again filled with too much brain fluid, causing pressure on the brain, which a shunt will have to relieve. Back to square one. I watched them take out the stitches today from last week's surgery and felt sad knowing that there will be more to come shortly.
As we were waiting in the ER, I looked at the readings for Good Friday. I won't deny that I will really miss being at any of the services today, as hoped. But reading through the scripture passages, it does not matter where we are. We are in union with the world over as we remember the sacrifice of Jesus, Our Saviour. Our day will be offered up to Him.
An sightful writing by Monsignor James Turro, "Seven Last Words" helped me hold onto the trust I cling to each day. He writes -
The Fourth Word:
"My God, My God, why have you forsaken me?"
These words, dear Jesus, taken as they stand, speak of a mind-numbing despair. But these are only the opening words of a psalm that is interpenetrated with hope, the psalm which goes on to say, and which you went on to pray: "In you our ancestors trusted; they trusted and you rescued them. To you they cried out and they escaped; in you they trusted and were not disappointed: (Ps22:5-6) In reality then, your mood must not have been one of despair but of unshakable trust. In your darkest hour, you expressed your deepest trust. You show to me and to all that "nothing makes us as great as sorrow: (Alfred de Musset).
And so we forge on, trusting that God is taking us where He wants us to be in this moment. Please pray that the medical staff will be able to find a final solution to this issue of the shunt and the complications that have ensued. I know the prayers will be heard and we will continue to wait patiently for God to bring us where He intends.
I end with this prayer -
"Lord, by shedding His blood for us, your Son, Jesus Christ,
established the paschal mystery. In your goodness, make us holy
and watch over us always. We ask this through Christ our Lord. Amen.
In thanksgiving to everyone who has helped us in all ways, we are eternally
grateful. We pray that you will come closer to God than ever before, as you continue your walk with Jesus each day you are graced with life.
Love,
Jon and Rebecca
(Hello Thomas Zieg! Tell your family hello - I have thought of you so often!)
Tuesday, April 11, 2006
Paul's Prayer
Paul made a huge effort to get up and do things yesterday, although his head was throbbing. It got so bad that while we were sitting at the table to eat lunch, he asked me to hold his hand, as he reached for mine.
He then asked if I would say a prayer with him.
He then prayed,
"Please God, help the pain in my head go away soon. But if You need me to have it longer, then I will wait. Amen."
That continues to be our prayer to God in Holy Week.
I have also prayed that we be lead to a doctor who might be able to figure out for sure what is needed to help Paul with his recovery stage, so that we can start the rehabilitation phase for him. He is still experiencing muslce spasms in his stomach where the shunt tube incision is, but his doctor does not know why that is happening. Nor why Paul is experiencing such sensitivity to light. We are trying to find a neurologist who might be able to give us a second opinion that the course of action taken is the right one. This whole process left me feeling so helpless yesterday. Paul is so vulnerable and needs good decisions to be made. With such limited knowledge that we have about Paul's condition, it is hard to know which way to turn. I have prayed with Paul this morning that we be led and that God will help us know what pathway will be best for Paul and in accordance to His will. God knows what Paul needs and He has graced us in so many ways, that I am sure He will not abandon us at any stage.
Paul's prayer reminded me once again that the servant God intends Paul to be, will be. Paul praying out loud with such childlike belief and faith also reminded me to pray, "Jesus. I trust in You". While I feel such pain watching Paul suffer, calling out to Jesus brings me comfort and renewed faith. Just as it must for Paul when he called out to God. My mother always reminded me in life to "take it to the TOP and give it to God".
Maybe God was just waiting for Paul to do the same!
We ask that you include in your intentions the guidance we need in finding the answers for Paul's recovery.
"O Blood and water that gushed forth from the Sacred Heart of Jesus as a fountain of mercy for us, we place our trust in You."
Peace in Christ, Our Lord and Saviour,
Jon and Rebecca
He then asked if I would say a prayer with him.
He then prayed,
"Please God, help the pain in my head go away soon. But if You need me to have it longer, then I will wait. Amen."
That continues to be our prayer to God in Holy Week.
I have also prayed that we be lead to a doctor who might be able to figure out for sure what is needed to help Paul with his recovery stage, so that we can start the rehabilitation phase for him. He is still experiencing muslce spasms in his stomach where the shunt tube incision is, but his doctor does not know why that is happening. Nor why Paul is experiencing such sensitivity to light. We are trying to find a neurologist who might be able to give us a second opinion that the course of action taken is the right one. This whole process left me feeling so helpless yesterday. Paul is so vulnerable and needs good decisions to be made. With such limited knowledge that we have about Paul's condition, it is hard to know which way to turn. I have prayed with Paul this morning that we be led and that God will help us know what pathway will be best for Paul and in accordance to His will. God knows what Paul needs and He has graced us in so many ways, that I am sure He will not abandon us at any stage.
Paul's prayer reminded me once again that the servant God intends Paul to be, will be. Paul praying out loud with such childlike belief and faith also reminded me to pray, "Jesus. I trust in You". While I feel such pain watching Paul suffer, calling out to Jesus brings me comfort and renewed faith. Just as it must for Paul when he called out to God. My mother always reminded me in life to "take it to the TOP and give it to God".
Maybe God was just waiting for Paul to do the same!
We ask that you include in your intentions the guidance we need in finding the answers for Paul's recovery.
"O Blood and water that gushed forth from the Sacred Heart of Jesus as a fountain of mercy for us, we place our trust in You."
Peace in Christ, Our Lord and Saviour,
Jon and Rebecca
Saturday, April 08, 2006
There's No Place Like Home
Amen to that!! Paul has been in the hospital 5 times in almost 5 months and it is always so terrific to be back home.
When we packed up early Thursday morning (5 A.M.) to get Paul to the hospital at 6 A.M. I noticed the Marian Missal I have had since 5th grade that was on my night stand. I decided to bring it with me. I had originally pulled it off the bookshelf when Pope John Paul II died and they were saying the Mass in Latin. My missal has Latin on one side of the page and English on the other. I as able to follow along with that Mass and after using it, realized there is a wealth of information in the missal. While I was waiting for Paul to be taken to a room after recovery (which was 7 hours later) I decided to look up the readings for the day. I came across the information that on Friday it was the Feast of the Seven Sorrows of the Blessed Virgin Mary. The church used to commemorate by 2 feasts the martyrdom suffered by Our Lady in union with the Passion of Her Son. The first especially commemorates 'the Compassion of Mary', which was Friday and then on Sept 15, the devotion to the Seven Sorrow suffered by Mary as told to her by Simeon. I also read that this past week used to be referred to as Passiontide (Passion Week). I then realized that Friday was also the first Friday of the month and up until the accident, I had not missed Mass on First Friday in years. I had such a desire to go and prayed that I would somehow be able to manage that.
Uncle Joe and Aunt Bev visited with us Thursday night, which helped cheer up the evening for Paul. He was in a lot of pain and was very weak. He had not had anything to eat since the day before. That is the part I worry about so much as Paul ends up with so much weight loss and weakness after a hospital stay. They did bring him some beef broth later, which he drank.
When Jon was getting ready to leave, I asked him to call me at 4:30 A.M. so I could get home, get a shower and then we could go to the 6:30 A.M. Mass. Paul would surely be alright during these early morning hours. Around 1:00 A.M. the nurse came in and let me know that there was a CAT scan scheduled for Paul at 5:00 A.M. I was relieved to hear that, as he would be out of the room for a good portion of the time I would be gone. My prayer had been answered about getting to attend Mass. Jon and I were able to be at this early morning Mass for the first time in about 4 months. I was absolutely over joyed being there. We got to see our friends and were told that Paul is remembered in their prayers, which brings us so much comfort. Jon struggled to hold back his tears as people came up to us and let us know they were with us in spirit.
When I got back to the hospital, there was a 'liquid' breakfast for Paul. He finished a good portion of it and then slept until the doctor came. In that time frame, I stood in front of the large window and looked out at the expanse of the sky with all the beautiful early morning sun shining on the white clouds and I read the readings of the day for the Feast of the Seven Sorrows of the Blessed Virgin Mary. Then I started to read the prayer Stabat Mater:
"At the cross her station keeping,
Stood the mournful Mother weeping,
Close to Jesus to the last.
Through her heart His sorrow sharing,
All His bitter anguish bearing,
Now at length the sword had passed.
Oh, how sad and sore distressed
Was that Mother highly blessed
Of the sole-begotten One!
Christ above in torment hangs,
She beneah beholds the pangs
Of her dying, glorious Son.
Is there one who would not weep
Whelmed in miseries so deep
Christ's dear Mother to behold?
Can the human heart refrain
From partaking in her pain
In that Mother's pain untold?
Bruised, derided, cursed, defiled,
She beheld her tender Child,
All with bloody scourges rent."
While this is only part of the Stabat Mater, I could not contain the emotions it brought forth and I stood there crying. My pain seemed so minor in comparison to this vision I had in my head of Mary at the foot of the Cross. Yet, I knew my prayers had been heard and that Mary truly knew how much anxiety and pain I had felt in this past week. I truly experienced the comfort our Mother in Heaven was offering to me in that moment of prayerfulness. I then knelt by Paul's bedside and prayed over him, that he would be able to continue to offer up all his suffering in union with Our Lord. He will need prayers for that strength. All of this was turned over to Jesus and I was then able to sit and sleep very peacefully for about 45 minutes.
The doctor came in and said that the surgery did what it was supposed to do and he took the tube out of Paul's head. He immediately stitched the tiny hole, which caused Paul more pain, as there was no 'numbing' of the skin before the doctor stuck the needle in a couple of times to make the stitch. It took me by total surprise that he would do this in the room. I was glad I had not eaten breakfast yet!
He said that Paul could go home as soon as he wanted and that we will need to follow up in a week at his office to have the stitches removed. The place where they had to bore a hole in the skull has about 15 stitches and there are 2 other sites with 2 and 3 stitches, very minor cuts. The place with 15 stitches was in the same place as the original scar, so there will not be additional scars on Paul's head. Around noon, I started to help Paul ease into his clothing and when lunch was brought in I didn't think he would eat anything. He said his stomach really wanted food, but his head was throbbing. Then he said he would try to eat the turkey sandwich. He actually finished the whole thing! We left around 1:45 and got home by 2:15. Paul made sure to take notice of Abby, which delighted her to no end. He then went to bed and slept peacefully for 4 hours.
Last night, Bev and Courtney came over with the movie "Narnia" and we got some sandwiches from Subway. Paul ate his whole sandwich and at 10 P.M. told me he was really hungry. He decided to walk downstairs to see what he could eat. Nothing appealed to him and so he asked if we could go to Wendy's. I stood staring at him in disbelief and even checked him for a temperature. Bev was still there, so I told Paul that she would stay with him and I would quick get his hamburger. He said, "I want to go with you." I helped him walk back upstairs to get his tennis shoes and he put them on without socks. We walked back downstairs and I truly thought he would sit down and say never mind, he was too tired to go. But he didn't and we all walked out the door. (Jon was at the airport getting Michael, who was coming home from visiting his brothers at Ave Maria University in Naples.) I had Paul call his dad to let them know where we were going so that Jon would not go into instant panic if he got home before we did. He was at KFC getting Michael some dinner, so we all ended up at home at the same time. We stayed up until a little past 11 P.M. and then Paul wanted to know what movie we would watch next!!! We watched a few minutes of another movie, but we fell asleep fairly quickly. I woke up and turned everything off and that ended our First Friday!
May God bless us all as we enter into Holy Week. I will have my Dad in my heart as I go through this week, as it is my most favorite time of the year. He taught me to love it so much. He died on Easter Sunday after so much suffering during the week. It was a visual aid to me about how much suffering Jesus did for us all. This will be the culmination of a Lenten season that has brought so much more awareness to our family of what we are called to be as followers of Christ. God bless us all as we perservere on our journey. I will also have my sister in law, Kelly, in my prayers as she prepares to be baptized into the Catholic Faith on Holy Saturday. I know my Dad will be smiling.
Peace in Christ,
Jon and Rebecca
When we packed up early Thursday morning (5 A.M.) to get Paul to the hospital at 6 A.M. I noticed the Marian Missal I have had since 5th grade that was on my night stand. I decided to bring it with me. I had originally pulled it off the bookshelf when Pope John Paul II died and they were saying the Mass in Latin. My missal has Latin on one side of the page and English on the other. I as able to follow along with that Mass and after using it, realized there is a wealth of information in the missal. While I was waiting for Paul to be taken to a room after recovery (which was 7 hours later) I decided to look up the readings for the day. I came across the information that on Friday it was the Feast of the Seven Sorrows of the Blessed Virgin Mary. The church used to commemorate by 2 feasts the martyrdom suffered by Our Lady in union with the Passion of Her Son. The first especially commemorates 'the Compassion of Mary', which was Friday and then on Sept 15, the devotion to the Seven Sorrow suffered by Mary as told to her by Simeon. I also read that this past week used to be referred to as Passiontide (Passion Week). I then realized that Friday was also the first Friday of the month and up until the accident, I had not missed Mass on First Friday in years. I had such a desire to go and prayed that I would somehow be able to manage that.
Uncle Joe and Aunt Bev visited with us Thursday night, which helped cheer up the evening for Paul. He was in a lot of pain and was very weak. He had not had anything to eat since the day before. That is the part I worry about so much as Paul ends up with so much weight loss and weakness after a hospital stay. They did bring him some beef broth later, which he drank.
When Jon was getting ready to leave, I asked him to call me at 4:30 A.M. so I could get home, get a shower and then we could go to the 6:30 A.M. Mass. Paul would surely be alright during these early morning hours. Around 1:00 A.M. the nurse came in and let me know that there was a CAT scan scheduled for Paul at 5:00 A.M. I was relieved to hear that, as he would be out of the room for a good portion of the time I would be gone. My prayer had been answered about getting to attend Mass. Jon and I were able to be at this early morning Mass for the first time in about 4 months. I was absolutely over joyed being there. We got to see our friends and were told that Paul is remembered in their prayers, which brings us so much comfort. Jon struggled to hold back his tears as people came up to us and let us know they were with us in spirit.
When I got back to the hospital, there was a 'liquid' breakfast for Paul. He finished a good portion of it and then slept until the doctor came. In that time frame, I stood in front of the large window and looked out at the expanse of the sky with all the beautiful early morning sun shining on the white clouds and I read the readings of the day for the Feast of the Seven Sorrows of the Blessed Virgin Mary. Then I started to read the prayer Stabat Mater:
"At the cross her station keeping,
Stood the mournful Mother weeping,
Close to Jesus to the last.
Through her heart His sorrow sharing,
All His bitter anguish bearing,
Now at length the sword had passed.
Oh, how sad and sore distressed
Was that Mother highly blessed
Of the sole-begotten One!
Christ above in torment hangs,
She beneah beholds the pangs
Of her dying, glorious Son.
Is there one who would not weep
Whelmed in miseries so deep
Christ's dear Mother to behold?
Can the human heart refrain
From partaking in her pain
In that Mother's pain untold?
Bruised, derided, cursed, defiled,
She beheld her tender Child,
All with bloody scourges rent."
While this is only part of the Stabat Mater, I could not contain the emotions it brought forth and I stood there crying. My pain seemed so minor in comparison to this vision I had in my head of Mary at the foot of the Cross. Yet, I knew my prayers had been heard and that Mary truly knew how much anxiety and pain I had felt in this past week. I truly experienced the comfort our Mother in Heaven was offering to me in that moment of prayerfulness. I then knelt by Paul's bedside and prayed over him, that he would be able to continue to offer up all his suffering in union with Our Lord. He will need prayers for that strength. All of this was turned over to Jesus and I was then able to sit and sleep very peacefully for about 45 minutes.
The doctor came in and said that the surgery did what it was supposed to do and he took the tube out of Paul's head. He immediately stitched the tiny hole, which caused Paul more pain, as there was no 'numbing' of the skin before the doctor stuck the needle in a couple of times to make the stitch. It took me by total surprise that he would do this in the room. I was glad I had not eaten breakfast yet!
He said that Paul could go home as soon as he wanted and that we will need to follow up in a week at his office to have the stitches removed. The place where they had to bore a hole in the skull has about 15 stitches and there are 2 other sites with 2 and 3 stitches, very minor cuts. The place with 15 stitches was in the same place as the original scar, so there will not be additional scars on Paul's head. Around noon, I started to help Paul ease into his clothing and when lunch was brought in I didn't think he would eat anything. He said his stomach really wanted food, but his head was throbbing. Then he said he would try to eat the turkey sandwich. He actually finished the whole thing! We left around 1:45 and got home by 2:15. Paul made sure to take notice of Abby, which delighted her to no end. He then went to bed and slept peacefully for 4 hours.
Last night, Bev and Courtney came over with the movie "Narnia" and we got some sandwiches from Subway. Paul ate his whole sandwich and at 10 P.M. told me he was really hungry. He decided to walk downstairs to see what he could eat. Nothing appealed to him and so he asked if we could go to Wendy's. I stood staring at him in disbelief and even checked him for a temperature. Bev was still there, so I told Paul that she would stay with him and I would quick get his hamburger. He said, "I want to go with you." I helped him walk back upstairs to get his tennis shoes and he put them on without socks. We walked back downstairs and I truly thought he would sit down and say never mind, he was too tired to go. But he didn't and we all walked out the door. (Jon was at the airport getting Michael, who was coming home from visiting his brothers at Ave Maria University in Naples.) I had Paul call his dad to let them know where we were going so that Jon would not go into instant panic if he got home before we did. He was at KFC getting Michael some dinner, so we all ended up at home at the same time. We stayed up until a little past 11 P.M. and then Paul wanted to know what movie we would watch next!!! We watched a few minutes of another movie, but we fell asleep fairly quickly. I woke up and turned everything off and that ended our First Friday!
May God bless us all as we enter into Holy Week. I will have my Dad in my heart as I go through this week, as it is my most favorite time of the year. He taught me to love it so much. He died on Easter Sunday after so much suffering during the week. It was a visual aid to me about how much suffering Jesus did for us all. This will be the culmination of a Lenten season that has brought so much more awareness to our family of what we are called to be as followers of Christ. God bless us all as we perservere on our journey. I will also have my sister in law, Kelly, in my prayers as she prepares to be baptized into the Catholic Faith on Holy Saturday. I know my Dad will be smiling.
Peace in Christ,
Jon and Rebecca
Thursday, April 06, 2006
Day Tripper
Paul's surgery went well and he may be here only 24 hours!!! I have to wait until they have a room in the Neuroscience Unit to open before I can see him. It is always amazing to me that if I just wait patiently, God shows His way to me. When they told me that they were waiting for a couple of patients to be discharged and then the room would have to be cleaned, I knew they were talking about hours before I could see Paul again. My heart sunk and I wondered what I would do during this time. Feeling very hungry, since I had not eaten anything this morning, I went down to the cafeteria and got a little something to eat. There are windows across the cafeteria and the weather is just beautiful today, so I decided to eat outside on the patio. I turned on the computer and connected to the internet and went to the blog site. I read the comments posted today and had to work hard to not cry, since there were others around me. I could not stop the flow because it really felt like everyone was right here with me and I felt such comfort once again. To show that it was God's hand in all this, my attention was immediately drawn the sounds and sights of nature all around me. There was a monarch butterfly to my left about 15 feet away and only 3 feet away were 2 very tiny birds in the garden. The garden out in front of me was bursting with color from tulips and pansies and the sky had wispy white clouds that always remind me of angel wings. The chirping of birds was being carried to me on the gentle breeze blowing and I started to tear up all over again. Why do I doubt when I have had so many awesome visual aids showing that God knows our needs and hears our prayers? I will pray that St. Thomas the Apostle will take me as his special project!! May the force be with him..............smile.
Last night as we prayed the rosary, I remembered that we were married on the feast of St. Cosmas and Damian, two brothers who were physicians. Smiling at the thought about how all of this began with our marriage 25 years ago, I asked these 2 saints to pray with us, that the hands of the doctors and nurses would be led to do the best by Paul. I also asked St. Raphael, the medicine of God, to join us. That is when my doubt eased and my trust was restored.
Another moment that helped me this morning was when I went to the chapel after they took Paul in for his surgery. The room was very quiet and the sun was shining in the room. There was a prayer request book and I read the prayer of a woman whose mother was dying and I could instantly relate what she was feeling. It had been written the day before. I stood there praying that God would help this family as He had ours, and provide them with the strength to accept His will. I turned around and the hospital chaplain who had come to comfort us in the days following the accident was standing there. She recognized me immediately and gave me a hug. She listened as I told her of the amazing progress Paul has been making. She said that she was changed so much by our experience and she was glad she got to see me to let me know that. She said she does not usually come into the chapel, but for some reason decided to walk in. She of course laughed and said she understood why, once she saw me!
In relaying all the recovery that Paul has made, I realized it is hard to see the forest for the trees since I am always in the middle of it! Paul has really made great strides these past weeks, with only headaches holding him back. We will wait as God keeps working on that!
"Take up therefore thy cross and follow Jesus and thou shalt go into life everlasting. He is gone before thee, carrying His cross, and He died for thee upon the cross, that thou may also bear thy cross and love to die on the cross."
May God bless us all as we carry the burdens He has chosen and know that in all things He will sustain us.
Love,
Jon and Rebecca
Last night as we prayed the rosary, I remembered that we were married on the feast of St. Cosmas and Damian, two brothers who were physicians. Smiling at the thought about how all of this began with our marriage 25 years ago, I asked these 2 saints to pray with us, that the hands of the doctors and nurses would be led to do the best by Paul. I also asked St. Raphael, the medicine of God, to join us. That is when my doubt eased and my trust was restored.
Another moment that helped me this morning was when I went to the chapel after they took Paul in for his surgery. The room was very quiet and the sun was shining in the room. There was a prayer request book and I read the prayer of a woman whose mother was dying and I could instantly relate what she was feeling. It had been written the day before. I stood there praying that God would help this family as He had ours, and provide them with the strength to accept His will. I turned around and the hospital chaplain who had come to comfort us in the days following the accident was standing there. She recognized me immediately and gave me a hug. She listened as I told her of the amazing progress Paul has been making. She said that she was changed so much by our experience and she was glad she got to see me to let me know that. She said she does not usually come into the chapel, but for some reason decided to walk in. She of course laughed and said she understood why, once she saw me!
In relaying all the recovery that Paul has made, I realized it is hard to see the forest for the trees since I am always in the middle of it! Paul has really made great strides these past weeks, with only headaches holding him back. We will wait as God keeps working on that!
"Take up therefore thy cross and follow Jesus and thou shalt go into life everlasting. He is gone before thee, carrying His cross, and He died for thee upon the cross, that thou may also bear thy cross and love to die on the cross."
May God bless us all as we carry the burdens He has chosen and know that in all things He will sustain us.
Love,
Jon and Rebecca
Wednesday, April 05, 2006
The Long and Winding Road
On the tails of that wonderfully high emotional weekend, we followed up with the neurologist on Tuesday morning. He wanted a CAT scan done, so we drove over to the hospital and spent the better part of the day waiting for that and getting the film to take to the doctor this morning. It really drained Paul yesterday, and we had a repeat today since his doctor said that they need to do additional surgery on his brain at 8:00 A.M. Thursday. We had to go over to the hospital again to get all the pre-op done. I was very frustrated because between these 2 days, Paul has been able to eat only 4 meals and had very limited fluid intake. Today they could not even draw blood because he was somewhat dehydrated. They finally let us go and will have to do blood work tomorrow before the surgery. We will try to get Paul as much nutrition and liquids as possible before midnight tonight. A very tiring 2 days for Paul, which caused me to experience a high level of anxiety. Hearing there is to be more surgery on his head caused me to feel great disappointment. I kept looking at Paul all day as he tried to lay his head down somewhere due to the pain, and it was mostly on my shoulder (note to self, bring pillow to all appointments!). I have fought back tears all day as I thought about the added pain from recovery from surgery and the problems with getting him back on a nutritional diet while he is there, without causing him to vomit. I am afraid I have lost so much confidence that this will be the 'fix' and I will need to shore up on my prayerfulness to regain some hope.
We were told that the shunt did a good job....... too good. It drained off too much fluid and that allowed the brain to shrink and let fluid build up on the outer part of the brain, along the skull. They now have to tie off the shunt and then bore a hole into Paul's skull to allow the fluid to drain off. In a couple of months, they will put in a programable shunt. I asked why a programable shunt was not used initially and was told that because it has magnets, it is not used except in more difficult cases and Paul's has turned out to be that. Everytime he gets an MRI done in life, the shunt will have to be reprogramed since the magnets will be affected by any MRI's. They can reprogram from the outside, using magnets. I was told that they could wait a month or so to see if after tying off the shunt, the brain could absorb the fluid in the other area of the brain where it has since accumulated, but if not, then they would have to bore the hole anyway. I sat there listening, knowing that I don't have a clue about what is the best way to go. I prayed so hard after the doctor left the office and asked that the right decision will be made.
I am asking, yes, once again for prayers for the doctor to make the correct decisions concerning Paul so that these procedures will be done with this surgery. Since we don't know anything about shunts/hydrocephalus/brain fluid, we are totally dependent on God's will being done. What I pray also is that Paul will have to suffer as little as possible. I pray that my trust will stay as steadfast as God needs it to. I know I have weakened in these last 2 weeks. Watching Paul suffer from headaches and his almost bedridden state lately, I have so many questions and doubts that plague me. With continued prayer, I know we will find the strength to walk with Paul and follow what is intended for us. LOTS AND LOTS OF PRAYERS!!!! (I remember telling you at the beginning - God picked a very weak servant when he chose me!)
I will keep you updated tomorrow as soon as Paul gets out of recovery and is settled into a room.
The entire Fidero family thank you for all your prayerful support. We always pray for the intentions of those who have carried us in their thoughts and prayers!
Peace to all of you, in Christ Our Lord.
Jon and Rebecca
We were told that the shunt did a good job....... too good. It drained off too much fluid and that allowed the brain to shrink and let fluid build up on the outer part of the brain, along the skull. They now have to tie off the shunt and then bore a hole into Paul's skull to allow the fluid to drain off. In a couple of months, they will put in a programable shunt. I asked why a programable shunt was not used initially and was told that because it has magnets, it is not used except in more difficult cases and Paul's has turned out to be that. Everytime he gets an MRI done in life, the shunt will have to be reprogramed since the magnets will be affected by any MRI's. They can reprogram from the outside, using magnets. I was told that they could wait a month or so to see if after tying off the shunt, the brain could absorb the fluid in the other area of the brain where it has since accumulated, but if not, then they would have to bore the hole anyway. I sat there listening, knowing that I don't have a clue about what is the best way to go. I prayed so hard after the doctor left the office and asked that the right decision will be made.
I am asking, yes, once again for prayers for the doctor to make the correct decisions concerning Paul so that these procedures will be done with this surgery. Since we don't know anything about shunts/hydrocephalus/brain fluid, we are totally dependent on God's will being done. What I pray also is that Paul will have to suffer as little as possible. I pray that my trust will stay as steadfast as God needs it to. I know I have weakened in these last 2 weeks. Watching Paul suffer from headaches and his almost bedridden state lately, I have so many questions and doubts that plague me. With continued prayer, I know we will find the strength to walk with Paul and follow what is intended for us. LOTS AND LOTS OF PRAYERS!!!! (I remember telling you at the beginning - God picked a very weak servant when he chose me!)
I will keep you updated tomorrow as soon as Paul gets out of recovery and is settled into a room.
The entire Fidero family thank you for all your prayerful support. We always pray for the intentions of those who have carried us in their thoughts and prayers!
Peace to all of you, in Christ Our Lord.
Jon and Rebecca
Monday, April 03, 2006
Roller Coaster
Jon and Paul walking over to the Aylors
Visiting with Connie and Ron Aylor, next door neighbors. Connie keeps us uplifted with her frequent comments on the blog! 
Marie, Jon and Paul 
Jon and Marie
Michael and James
Dinner on the deck
The whole Fidero Family, Michael, Jon, Marie, Jon, Rebecca, Paul, & JamesFriday morning was the beginning of the ride. We started the steep ascent with the appointment at the opthamologist. I felt very tense inside as they dilated Paul's eyes to see what kind of health the optic nerve might be in. It was dark in the room, but Jon and I were looking across at each other and were praying that we would hear some positive news about Paul's eye. We now were speeding down the first hill as the doctor said that the nerve was pale, which meant that it had suffered a tramatic injury. I knew the answer to my question even before I posed it. The nerve does not regenerate and Paul is legally blind. His vision is affected in that only 1/2 of his view out of that eye works minimally. Basically it is dark on the upper half. There are a number of problems due to his injury. His 3rd and 7th cranial nerves seem to have been impacted and whether he will recover from the paralysis is questionable (and truly up to God!) and his cornea health is suffering because he cannot close his eyelid. When we close our eyes, the eyeball will turn up which provides more protection for the cornea. Paul's left eye stays at the same level, so his cornea is still exposed to air. There are some dry and rough spots on the cornea which bodes poorly for the long term health of the co
rnea. While the doctors told us that we had done an incredible job of protecting the cornea given the circumstances, it was inevitable that this drying would happen. I asked if there is the possibility of nerve replacement surgery and was told no. I will not take that as gospel at this time and we have continued to pray for the guidance to find God's will in all of this. But both Jon and I felt intense sorrow for Paul as the doctor explained the condition of his eye and the probability of total blindness. We were advised to buy glasses for Paul to wear to protect his one good eye. They will do surgery sometime soon to put a gold weight in the eyelid of Paul's eye so that it will stay as closed as possible to help maintain the present condition of the cornea. We were told that the cornea will slowly deteriorate over time, but this will slow the process.
We were taken to another room to wait to get information about scheduling surgery. It is a darkened room where people wait after their eyes have been dialated, for further examination by the doctor. Jon, Paul and I sat in silence as Jon held Paul's hand. Finally, Paul said his eyes and head were hurting a lot, so I told Jon to take Paul home and I would wait for the nurse who schedules the surgeries. Jon was going to leave from the doctor office and go straight to work, so we had 2 cars. As I was waiting, I was trying very hard not to let the tears flow. A woman was sitting across from me and asked how old Paul was. I told her 21. She smiled and we went back to sitting quietly. She then started to comment on how beautiful all the models were in the magazine that she was reading. I just nodded because I knew if I started to talk I would cry. She then said that they had to work so hard at looking beautiful and then said, "well, maybe some of it is natural". That made me smile and then she looked at me and said her grandson had survived cancer. He fought it for 4 long years and he has been in remission for 3 years. She said he was bald for all those years and they were told that because of the radiation, he would never really attain a high level of intelligent and would struggle in school. She smiled and then said that he is a straight A student in high school and is the WIND BENEATH HER WINGS! ( A title I have used recently for this site - coincidence..........I think not!) She said that he has brought so much joy to the whole family with his zest for life and his wonderful humor and with the prayers and love of family, he is attaining all of his potential. She was then called back by a nurse. She stood up and smiled at me again and walked away. I knew God had placed that 'angel' in my pathway to help me with my pain. I did not cry with sorrow but joy. The tears flowed, but I felt great comfort in that moment. I know Paul will see what God intends. With prayers and love, he will see all that God wants him to see. I was coasting again on the roller coaster.
I got home and Jon said that he took the day off, he wanted to just be with Paul and me. We had lunch, but Paul was having a hard time staying awake. I was really worried about this, that he cannot stay awake for more than an hour at most. I called the doctor and he said to get him to the emergency room. Up the second hill on the ride. We packed up and went there. It was around 1:30 P.M. We were able to say the Divine Mercy at 3:00 P.M. which was important to me. This was the 4th anniversary of my father's death (Easter Sunday, March 31st) and my brothers and sisters were going to be praying at the same time, united in spirit with each other. Then at 5:30 P.M. we realized that we would not get into a room anytime before 10 because of the trauma patients that kept coming in. Jon and I discussed what would be best for Paul and we took him home to get a good night sleep. Any subsequent surgery would not happen before Monday or Tuesday anyway and Paul was missing feedings and it was very cold in that waiting room. We got home and got him fed, then sat with him the rest of the evening. We went to sleep, knowing the boys would arrive very late at night from Naples. Coasting again but with a little apprehension of what might happen since we hadn't stayed and also worried about the kids still traveling.
At about 11:30 Jon, Marie and James got home and we got up. We were all downstairs talking quietly and all of a sudden Paul came down the stairs. He must have heard us and he wanted to see his brothers. They stayed up until 12:45 A.M. laughing and talking. Paul was so alert and the conversations just flowed, along with tons of laughter. It was all so joyous and none of us could believe the clear thinking and thought processes of Paul. He was as sharp as ever, and his humor was on the mark. I finally said we needed to get to sleep so that we would not sleep Saturday away. Seven people went to bed with happy hearts. The next few hills were just the kind I like - the smaller, easy to handle kind that don't cause knots in your stomach!
We woke around 8 A.M. and Jon and Marie got some breakfast going. Jon and I had sat on the front porch watching the rain that was falling so softly and talked about the night before and how glad we were that we came home from the hospital. What a blessing that we didn't stay, as Paul received much better 'medicine' being at home with his brothers. He woke up around 9:30 and he was again as alert as the night before and engaged in as many conversations as he could. The Fidero's have a bad habit of talking pretty much at the same time - and it is difficult to follow without a brain injury! Paul ate breakfast and then we got him bathed and dressed. He wore shorts for the first time - it was so warm and sunny by this time. We all sat around and looked at the pictures from the wedding, then Paul was extremely tired, so he slept for an hour. My sister Beverly and her daugther Courtney came by and visited with the boys and Marie. I was busy getting some other things done and just enjoyed the noise in the house. It has been so long since it has sounded like that, and it was a huge blessing for me to hear it again.
Jon, Marie and I went next door to Connie and Ron Aylor's house because Jon wanted to talk to Ron about house building. Jon is going to possibly be helping a friend who is interested in the type of framing like they used to do a couple of hundred years ago. There is a name for it that I can't remember. Ron makes 18th century furniture, using tools from that time and no electricity. His workshop is like a step back in time and I knew Jon and Marie would really enjoy seeing it. We were visiting out in the workshop and then my husband Jon and Mike joined us. As we were talking, Jon saw Paul walking around the house by himself. He ran over to him and asked what he was doing. He had been looking for us. We all thought he was sleeping. My first reaction was complete horror as I realized he could have fallen, but then I was glad to see that he did something on his own. That's initiation, which is an area we were told Paul would have great difficulty with. Jon walked Paul over to the Aylor's and after about 10 more minutes we finished visiting.
We planned a BBQ dinner and Marie and Jon prepared it. We set up tables outside and had dinner on the deck. Paul sat for about 10 minutes, but his head was hurting, so he said he had to go to bed. We were disappointed, to say the least. But it had been a big day for him. Then, he surprised us again, and 5 minutes later, he walked back out onto the deck and said he really wanted to eat the steak. He tried, but his head was throbbing, so he had to leave. Jon (son) picked up both his plate and Paul's and he followed Paul upstairs to his room. Jon then got Paul comfortable in his bed and kept him propped up so he could eat his dinner. The 2 of them ate and talked like they have done hundred's of times before. It was so awesome for Paul to have his big brother do this for him. That reminds me also of what Jon and Mike did for Paul. In the early afternoon, they shaved their heads in support of Paul. Mike left his a bit longer. Paul got a kick out of it when he saw them. He joked about how everyone wants to look like him................smile. Paul did a lot of joking about his appearance, but his brothers took a lot of time telling him how he almost died and how much love and prayer surrounded him and continues to. He listened very intently as Jim told him so much of what happened in the hours and days that followed his accident. Paul said later that he was so lucky to have his family and friends and at least he was alive. He knows it will be a long hard walk ahead, but he is beginning to understand he is not alone. That will be a huge support to him in the coming months.
Sunday, we tried to get him ready for church, but he just could not make it. He didn't have the energy and his head was feeling 'very weird'. Jon (husband) stayed home so I could be at Mass with everyone else. The boys had to leave right after Mass and they took Michael with them since he is on his Spring break. He will fly home next weekend. The house was so silent after they left, but the memories kept a smile on my face.
The last big hill before the final coast into the end of the ride. We took Paul for a walk, but he said to get him back home quickly. We did and he laid down because he said his stomach was really hurting. I was downstairs and Jon called out to me loudly to get back to Paul's room quickly. There was a really large knot on Paul's abdomen, which I thought might be a cramp. I was not sure and Paul kept groaning. Jon and I bolted out of the house with Paul to get him to the hospital, but as we were preparing to leave, Paul said it was better and the lump was gone. We got him back into the house and watched him carefully for the next 2 hours. He then asked for dinner and he finally settled on the suggestion of grilled chicken sandwiches. Jon got them from Boston Market and we all sat in Paul's room and ate. I split one with Paul, thinking he was not going to eat much, but he asked for another one! He ate it all and then asked what we were going to do that night? I asked what he might like to do and he said, "Well, I guess we are rather limited since I have a weird head, can't stay up for very long and look like I do." He was laughing as he said it. We ended up watching a movie, then I read to him. He fell asleep and slept through the night.
It was a long weekend with so many emotions felt, and this morning I was drained. I went outside after the thunderstorm passed and the wind was blowing fairly hard. I stood in the warm sun and prayed that the Holy Spirit would continue to move in our souls as the wind was doing in the trees, removing the doubt that seems to plague me on this journey. There will be more sorrow and anxiety felt as we continue forward, but there is always the warmth of God's love that gently wraps around us. It was displayed in the woman who spoke to me at the doctor's office and in the love shared by our family this weekend and then again in the warm sun and wind this morning. It has also been displayed in the constant prayers of so many people who are riding this roller coaster with us! I don't know how we could have done all this without your support.
May the God of hope fill us with all joy and peace in believing, so that we may abound in hope by the power of the Holy Spirit.
Glory to God in the highest, Peace to His people on earth,
Jon and Rebecca
Saturday, April 01, 2006
I Owe You My Thanks
Me and my awesome brother PaulDay in and day out, people at Ave Maria University ask me the question to which I could never answer fully or totaly honestly. That question is, "Hey James, how is your brother Paul doing?" I didn't want to dampen their spirits or hold them up, so I would always reply with the generic answer, "He's doing well." At the time, that answer was not always true, but now that answer is right on the mark. When we arrived on Friday, it came as quite a surprise to see that Paul was awake so that he could greet us at 11:30 P.M. when we came in. I stood in awe to see my brother talking and moving and walking and acting like Paul. He joked with me, and carried on a conversation longer than the usual two words. I asked him how he has been doing, and his reply was, "James, I just had surgery on my brain, for crying out loud. I've been better in the past." I laughed and rejoiced in the fact that my brother is back!!! He was acting like Paul again, and not the brain-injured brother that I thought I would have for the rest of my life.
Paul is speeding ahead with fantastic progression, and the only way I know how to accurately describe his rally like return is that it is like the flicking of a switch, or snap of the fingers, and bam- Paul is back! It was so weird because when I talked with him on the phone before his surgery the conversation was not at all like this and then upon seeing him, Paul has turned 180 degrees around for the better. I simply cannot thank God enough for the most precious gift I have ever received. I stand here completely amazed in life. I owe everyone who continued to show support for my family, and specifically Paul, with their prayers and total giving of themselves for our seemingly futile cause. I cannot describe my feelings enough. Paul is very much alive, and he is very much the Paul that I used to know before the accident, save the scars and physical damage. And all thanks to those who have shown their faith.
Here is a piece of free information...Prayer Save Lives. My example: Paul Fidero. His story is one of success. The only logical reason for him defying statistics, proving the doctors wrong and not dying is because of God's grace. Simply stated, Paul was going to die. The doctors did all they could. We all (you all) prayed fervently. Paul lived. Paul is back. I believe the only reason is because of the power of prayer, and the faith that was shown in this situation. Thank you all so much, I will return the prayers that you gave to us with prayers of my own.
IN THE SIGN OF CHRIST, WE WILL CONQUER.
-James Fidero
(My mother will enter her weekend update later this evening, but I wanted to get my posting on before we headed back to Ave Maria University and put in my 2 cents worth!)
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