Dream a Little Dream for Me

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