Family


The concert was almost beyond description in how wonderfully they sang and played.  I had in my mind when I drove over to KC to hear Granddaughter Chloe sing in the University of Missouri, Kansas City’s [UMKC] Children’s Choir that they would sing, along with another small choir of high school girls also sponsored by UMKC.  When I arrived, a Trombone Ensemble was playing Christmas music from the balcony of the church.  That was followed by the first piece, an unusual but very effective arrangement of “Carol of the Bells” played by the church’s (Atonement Lutheran) very large and accomplished Handbell choir.  Then began an evening filled with an array of classical and contemporary pieces of Christmas music, by a variety of choirs and instrumentalists from the Conservatory of Music at UMKC.  After putting together all the singers in the various choirs and the instrumentalists, there appeared to be well over a hundred performers. 

There were classical pieces from many periods of music, sometimes with choirs singing back and forth between stage area and balcony.  Chloe’s choir sang one song in German and another in French.  They did a great job.  There were more contemporary arrangements of some of the Carols.  The audience was invited to sing a couple of the familiar Carols. 

They were so skilled and well directed that it was possible to simply lose myself in the music, drinking it in, watching the performers, celebrating the marvelous impact of the sounds and visuals (the faces of the perfomers).  Son Micah put his arm around my shoulder and reminded me of my years of singing in choirs.  From the time I was about 14 until I graduated from the Seminary at 26, my life was all about singing in choirs.  I had the joy of serving as President and Student Conductor of five of those choirs spread over my high school and college (pre-seminary) years.  There were many choir tours including a three week tour to England, Holland, Germany, Austria and Switzerland.  There was the chant choir that rehearsed regularly and sang at chapel weekly during the three years on site (other than the Internship year) at the Seminary.  Even after that there were two or three years while serving a parish that I sang in a semi-professional choir called Schola Cantorum, a choir sponsored by the American Guild of Organists’ Chapter in Kansas City.

I was lost in the music until the choirs all gathered together to sing the last three pieces.  Of course, with so many voices they filled the room with sound when they sang, “Do You Hear What I Hear.”  For some reason, that is when it hit me how much Mary Ann would have loved being there, hearing the music, seeing Chloe sing.  I held it together with great difficulty.  Then came the all the college age singers, all eighty or hundred of them, along with a brass ensemble, and organ performing together doing “Joy to the World.”   The sound was overwhelming.  I could no longer keep it together.  The tears started streaming down my face and then there was the shuddering that happens when it finally breaks through.  I turned a bit away from the kids and tried to keep from being noticeable to anyone around me.  It is terribly hard to accept that she is gone from here.  I hate that she was not there to experience it.  I can’t change what has happened.  I did not lose myself in the grief.  The tears were appropriate, and in a way, they honored her.  Since crying has not been a part of my usual expression of emotions, when they do come, it is only when I can no longer keep them in check.   I work especially hard at keeping them under control when I am in public. 

We ran into Bob and Pat, a couple from my first Parish in the Kansas City area.  They were there since it was a fund-raiser for Harvester’s Food Bank that serves tens of thousands of folks in need of food through the many agencies who obtain that food from Harvester’s.  What makes that dimension of the evening especially meaningful to me is that in the mid-1970’s, it was a couple of folks from the congregation of which I was a pastor who started Harvester’s.  One of them, Jerry, had a cold storage company and the other, Bob, was a sales manager for Libby foods.  It was just a dream at first.  It has now grown beyond anyone’s imagination.  I recalled with Bob, one time when our congegation picked up windfall apples for Harvesters.  I drove a truck that could carry 20,ooo pounds.  No, we did not gather than many apples, but the truck was so large that when I drove it to the church, I was stopped by the police.  There were no trucks allowed on the Kansas side of State Line road.  I guess I would have been all right if I had been driving north, in the lane that was on the Missouri side of the mid-line.   When I explained what I was doing, the police officers allowed me to continue the few blocks to the church without issuing me a ticket. 

Last night was an evening I won’t soon forget.  It is quite a ride I am on.  Sometimes it just takes my breath away.

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I guess I feel pretty blessed.  This has been “All Saints’ Day” with the tradition of reading the names aloud in the service.  Mary Ann’s name was not read.  None of the names were.  There was a list in the Service Bulletin. but no reading.   I am sure her name was read in the congregation I served the last twelve years of my ministry, but I was not at home and could not attend that service. 

I am currently in Kentucky visiting Daughter Lisa, Denis and Granddaughters.  I knew that Lisa had requested that Mary Ann’s name be included on All Saints’ Sunday here, and my experience in the past concerning the tradition resulted in the expectation that it would be read aloud.  I felt emotionally vulnerable and expected to be impacted by the reading.  While I was not sure I was ready to hear it, I was certainly disappointed when it I did not hear it. 

I really like how the worship is conducted here in Lisa and Denis’s congregation. The music is wonderful.  Pianist Todd has improvisational skills combined with an obvious reverence that results in a welcoming tone throughout the service.  I like the Pastor, appreciate the preaching.  I just missed the reading of the names aloud.  It was a sad morning in that regard.  On the other side of it, Granddaughter Ashlyn was in a hugging mode.  She kept her Grandpa close in church.  She was sitting next to me and sang out clearly on the songs.  She and Granddaughter Abigail have perfect intonation when they sing.   Both Ashlyn and Abigail drew pictures for me during church.  I realize that I need to focus on life now, but the grieving and remembering are still an important part of my reality.

I remembered one All Saints’ Day when after the service a parent asked why their daughter who had died early that year was not included.  I was horrified that it had not gotten in since I had done the funeral.  I was able to discover the reason it wasn’t automatically on the list to be read.  The pattern for doing statistics for our national church body demands a certain way of recording folks.  The usual process used to obtain the names for the list did not work in her case.  It should have been caught and included.  I apologized, but it couldn’t undo the damage.  I now understand more fully the impact of not hearing read the name of someone loved deeply and lost in death. 

It is now Monday evening and I have returned home.  The feelings of sadness hung around yesterday (Sunday) and throughout most of the day today as I traveled.  It is always hard to say goodbye when coming to the end of a visit with family, especially the Kids and Grandkids.  The sadness is, of course, missing Mary Ann.  Lot’s of things brought her to mind.  It is always interesting to analyze the path from some random thought through the mental twists and turns that lead to from whatever the first thought was to missing Mary Ann. 

The sadness is also just feeling sorry for myself.  I have loved solitude for so long that it is hard to admit how much I don’t like being alone now.  Mary Ann was not at all verbal, especially in the last few years.   She did, however, have a strong presence.  She was in the car when we traveled, with needs that had to be met.  She was at home when I came home from wherever.  Her needs filled our lives with activity.  I was by myself in the car for nine or ten hours.  I came home to an empty house.  It is hard to make sense of this new reality, to find meaning and purpose in life without someone else with whom to share that life.  I recognize how pitiful this sounds, since there are people by the tens of millions who live by themselves and have fulfilling and meaningful lives.   I will get there eventually.  There are lots of times when I am on course to wholeness.  There are just times like these when the sadness hangs on for a while. 

Tomorrow is a very full day.  Hopefully, there will be little time for the sadness.   Focusing on immediate tasks and the needs of others helps diminish the power of the sadness, allowing joy to return.

When the Parkinson’s was first diagnosed, Mary Ann insisted on complete secrecy.  No family (even parents and siblings) could know, no friends, certainly no parishioners — only the Kids and I were to privy to the diagnosis.  That insistence continued for five years.  She allowed a couple of exceptions for me so that I would have somewhere to go to process what we were going through.  Actually, I don’t remember if their Mom gave Lisa and Micah permission to share with anyone.  They may comment on that. 

Mary Ann had always been an extremely private person.  She didn’t think her personal life was anyone else’s business.  After she was diagnosed, she did not want people to be looking at her as if there was something wrong with her.  She certainly did not want people feeling sorry for her and treating her as a sick person.  I have shared before how hard that five years was on all of us. 

Finally, the secret could no longer be kept since there were too many outward signs of the disease.  When we moved here in 1996 Mary Ann’s Parkinson’s was public information among the Leadership of the congregation.  The secret was out from the first conversation by phone with the Call Committee.  In fact, by that time, Mary Ann’s Parkinson’s was in the form that I filled out for the file in the District office, the form that was sent to the congregation as soon as my name was put on their list of Candidates. 

It is here that the story of one gift that came on account of the Parkinson’s begins.  Mary Ann received some special attention from a group of ladies in the congregation.  She was welcomed in a way that made her feel accepted and included immediately.  I did not see all the dynamics of that inclusion, but I was thrilled at its effect on Mary Ann.  She quickly developed a group of friends in the congregation.  While my being the Pastor brought us to the place and provided the setting, that group became her very own friends, not acquaintances of the Pastor’s Wife. 

Before going any further, I have to say that Mary Ann had developed connections when we were in the early years in Kansas City.  She often claimed (falsely) that people were friends with her because I was the Pastor.  The truth is, I was the more boring one and she was always the more interesting personality of the two of us.  I am not particularly thrilled with that assessment, but it is just the way it was. 

In the parish here, the Parkinson’s created a need.  The need was for help.  When Margaret began and Carol took over the task of scheduling, the Volunteers began coming.  At first it was an adjustment, especially for Mary Ann, to have people coming into the house and staying with her.  First of all, her combination of strength of will and denial, caused her to resist any admission of the need for people to be there.  She seemed to manage to fall in a way that did not do damage to her, so she was not convinced of the need.  While watching the knives waving this way and that from the dyskinesias when she was preparing food, terror entered the heart of the watcher.  She was convinced that she would not slice herself. 

Since many of the first Volunteers were already friends, she tolerated the lack of privacy surprisingly well.  In fact it shocked me that she did not fight harder against the idea.  As the number of Volunteers expanded, new friendships were added.  Since often there was some need being met in another room when the next Volunteer arrived, the custom was to announce her arrival and just walk in. 

The result was that our house had an open door policy.  It was almost comical some Wednesdays when Bath Aide Zandra was here, Kristie had come to clean, it was crossover time when two Volunteers were here, one arriving and the other getting ready to leave, and the Spiritual Formation Group (four of us) were lingering for a moment of conversation before leaving after our meeting.  Rather than feeling as if folks were intruding into our lives, it was a pleasant gathering of friendly people. 

One gift that came was that Mary Ann opened herself to all sorts of relationships.  She had a wealth of friends and knew that they were her friends, not simply members of the congregation of which I was Pastor.  I cannot know what would have happened without the Parkinson’s, but it is clear that from its presence in our lives, the gift of openness to relationships grew.   

As always, we certainly would not have chosen the mechanism, but there were some consequences of its presence that brought blessing to our lives.

In a former post I reflected on the power of the word “Hospice.”  When the neurologist suggested it, we pursued that option.  It fit our intentions for how we would travel the last leg of our journey together.  Enrolling in Hospice and then seeing her looking almost comatose one Sunday morning after an increase in the Seroquel (in an attempt to manage the hallucinations) combined to finally break the dam on the tears, a dam that had been holding them back for years.  I sat in the car at the Lake on that cold morning, listening to Celtic Woman Lisa Kelly sing, weeping loudly and long.  

It had finally sunk in.  There was a part of me that somehow thought we would just keep death at bay for years to come.  Mary Ann had bounced back from so many hits, any one of which would have taken a person with less grit and strength of will.  That morning, the denial was breeched.  That denial had allowed us to live a fairly normal existence in very difficult circumstances.  The truth is that Mary Ann never let go of the denial until she chose to stop eating and drinking.  I returned to that denial, comforting myself with the knowledge that some in the Lewy Body Dementia Spouse Caregivers online support group had been in hospice for as many as three years (maybe longer).   My denial didn’t begin to crumble again until the same time as Mary Ann’s.  Of course, I knew intellectually what was afoot, but my gut was not influenced by what I knew in my mind. 

Sending out the word that Mary Ann was now enrolled in Hospice, had the effect of moving friends to come and spend time with her.  Some of our Kansas City Crew of close friends came by and spent the better part of a day.  We have decades of history together, and stories to tell from that history.  As always we had a good time together. 

Friends Trudy and Coleman with whom we shared a similar history, came by and spent hours with us.  Trudy and Mary Ann had developed a special connection over the years.  It was a comforting few hours.  Mary Ann surprised us with her sharpness at one point when she remembered a name that the rest of us could not bring to mind.

Niece Diana and her Daughter Rachel came by from Northern Illinois for a couple of days.  When we were married, Diana was old enough to be a bridesmaid in our wedding.  That visit was especially meaningful to Mary Ann since geography and circumstances had made it hard for her to keep those family connections active.  Mary Ann could no longer write letters; she could not manage the computer to email; her voice was not strong enough nor did the words flow freely enough for her to talk on the phone.  That visit sort of filled an empty place that had developed in her life since travel had become so difficult for us, preventing much family contact.

Then there was the visit of the Three Friends from the North, Joy, Terry and Cherri.  That was the most wonderful gift she could have received before her journey here ended.  I have written often about them and the raucous times when the four of them got together.  It was no different this time.  They have hung out together since they were all in about the Fifth or Sixth Grade.  The old feisty Mary Ann emerged as the stories flew by.  It was a marvel to see. 

All those visits provided a fitting conclusion to Mary Ann’s life here.  There were many Volunteers who enjoyed time with her in the final months.  Those relationships had come to be very meaningful to her.  Then when the end finally came, all of us in her immediate family surrounded her, ministering to her and expressing our love for her.  While none of us would have chosen for her to leave so soon, the last leg of the trip was filled with good and satisfying times.  Her departure was peaceful, and I have no doubt her arrival at her next destination was filled with joy and wonder and happy reunions. 

In spite of the onslaught of the Parkinson’s and the other physical assaults on Mary Ann, in spite of the struggles we both had trying to negotiate all that was thrown our way, there are some gifts that came to us and those around us.  In fact some of those gifts came because of what we went through.  In subsequent posts I will describe some of those gifts.  I described them in the words that I shared at Mary Ann’s Memorial Service in Northern Illinois.  I need to describe them again and celebrate them.

It was a little less than a year ago that we headed off for a major trip again.  This one was to Kentucky to visit Daughter Lisa, Denis, Abigail and Ashlyn.  When we had done it in one day, it usually took us about eleven hours to get there.  This time, we stopped at a motel at about the halfway point.  We got plentyof rest, had a leisurely morning, and headed on to Louisville around noon.  Mornings always were extended by the time it took for each step in preparation for getting ready to go anywhere.  It was just a part of our reality. 

On other occasions we had stayed in the downstairs at Lisa’s.  Mary Ann’s Orthostatic Hypotension made that a challenge.  When she stood, her blood pressure would drop making her susceptible to fainting.  It was almost comical to see us help Mary Ann up the stairs.  One odd characteristic of Parkinson’s is that while feet may freeze on the level, stairs are no problem to negotiate.  The challenge was to get her up the stairs before the low blood pressure no longer provided an adequate blood supply to her brain to keep her from fainting. With one of us beside her and one in back, we raced up the stairs to a waiting chair.  On some of our visits, every time we arrived at the chair, she would faint.  On some visits she had less difficulty with it.  There was nothing we could come up with that explained why some times were better than others.

By this time last year, the OH was bad enough that it was no longer an option to stay in the downstairs.  We chose to stay in an extended stay motel.  It worked out well.  We took whatever time we needed in the morning at the motel, and ended up at Lisa’s house around noon.  We spent time with the family as long as Mary Ann’s stamina held out, and then headed back to the motel. 

We headed out in the car with the family, often to visit Huber’s winery and garden produce market and bakery (and ice cream parlor) in Southern Indiana near Denis’s family, with whom we visited.  Usually there was a trip to a restaurant.  There was lots of time watching Abigail and Ashlyn doing a variety of things.  There were many hugs, lots of pictures drawn and colored.  We had a good visit.

When we left, rather than coming straight home, we made the relatively short drive to Columbus, Indiana, to visit Brother Dick, Dee and the family.  Dick is a retired Pastor, fourteen years my senior.  We are almost from different generations, but have come to know and love each other as the years have gone by, as has been so with Dave, Gayle and Tish, our other siblings. 

I have described the setting at Dick and Dee’s place a couple of times before.  They live on a five acre plot with trees and ponds and gardens everywhere.  There are bees that provide honey, fish to be caught, vegetables to be picked from the garden and either eaten right away or canned to be eaten later.  Freshly baked bread and home made granola are mainstays.  There are birds constantly at the feeders attached to the rail or sitting on the deck right outside the floor to ceiling windows. 

We enjoyed a wonderful meal.  Then came the miracle.  Mary Ann had declined to the extent that walking more than a few steps had pretty much ceased to be an option — we thought.  When she tried to walk, many times the blood pressure would drop and so would she.  When we arrived at Dick and Dee’s, it was a little challenging to get the wheel chair where it needed to be.  Mary Ann just got up and walked the length of a long hall to the living room.  Then when we looked around the house, she walked and did not fall.  Later, we went over to see the magnificent house their Daughter Jill (our Niece) and her husband had built to house their three boys, by then in junior high and high school.  The house was perfectly outfitted for the boys having friends over to hang out together. 

Dick drove Mary Ann over in the golf cart he and Dee use to get around on the acreage.  We didn’t take the wheel chair.  Mary Ann toured the main floor of that huge house on foot, never falling once.  I could hardly believe what I was seeing.  After spending the night in a nearby motel, we headed back home the next day.  This time we made  the trip in one day.  For some reason, going home always seemed to go faster.  Part of that sensation was due to the fact that we crossed a time zone creating the illusion that we had taken less time. 

After we got home, the walking continued for weeks.  Before we left, I would jump up every time Mary Ann got up so that I would be ready to catch her before she fell.  I would, of course, try to convince her not to get up without warning me so that I could come and help.  After we returned, I relaxed and stopped jumping up when she stood.  That change made our days much less stressful.  That miracle made our last fall together a pleasant one. 

In the next post on this sight I will describe the subsequent trip to a Bed & Breakfast in Hot Springs, Arkansas, the one that would be our last trip. 

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Our travels took us first to Greenville, South Carolina when Lisa moved there, then met Denis and they married.  Needless to say, those trips were taken on a plane.  When they moved to Louisville, Kentucky, we could drive there.  It was at least ten hours for us to make the trip, but we could do it.  There was Interstate from within blocks of our house here to within blocks of their house there.  By that time we had dealt with the life-threatening pneumonia after the plane trip to Tucson, so we gave up on traveling by air. 

Then something remarkable happened that shortened the ten hour trip to three minutes.  It went something like this: Denis said to Lisa, “Why don’t we move to Topeka to help out your parents for a couple of years until your Dad retires.”  I don’t know if those were the exact words, but that was the gist of it.  Lisa called.   Mary Ann was ready for them to come.  I wanted them to be sure not to disrupt their lives and careers without thinking it through carefully.  Our goal in raising our children was that they have the best life possible.  They thought about it and did it.  It was their choice to make.  What a gift it was to us. 

Within weeks, Lisa, Denis, Abigail and Ashlyn were in our downstairs, heading out regularly to look at houses.  They found one three minutes away.   Denis looked for work locally, while continuing to work for his employer in Louisville, traveling some, doing much of his work at the computer.   Denis did so well from here in Kansas that his boss wondered if he shouldn’t move here.  The job continued all two years. 

During that time Lisa and the girls came to the house before I left for work two days of the week.  She took over scheduling the weekday Volunteers for the other days.  She and the girls would take Mary Ann to their house until late afternoon when I joined the family for supper at their home.  After supper, I took Mary Ann back to our house, where often there was another Volunteer who had  been scheduled by Mary for the time I was at an evening meeting.  Of course, there were many other times that Mary Ann would stay with Lisa and the girls or they would come to the house.   Between Mary, who scheduled evenings and weekends (weddings, retreats), Edie who scheduled Sunday mornings (after an early shift by a paid home companion from an agency), Jeanne who came on Thursdays, and Lisa dealing with daytimes, I was able to continue to fulfill my responsibilities as the Senior Pastor of a large and very active congregation.  Lisa’s presence in town, with help from Jeanne and Mary, even allowed me to once or twice a year to have a three day overnight retreat at St. Francis of the Woods Spiritual Renewal Center in Northern Oklahoma. 

Son Micah, Becky and Chloe had moved from three hours away to one hour away not many years before this.   He came over, especially when there was a major Saturday commitment that took me from the house.  During those two years, Mary Ann had the joy of all her Children and Grandchildren nearby.  She spent much time with Lisa and the girls because of my work schedule.  Lisa would often include her in craft activities and food preparation.  Even with all the limitations, Mary Ann had a good quality of life for most of her years. 

Needless to say, it was a sad day when around the time of my retirement, Denis, Lisa and the girls moved back to the Louisville.  The agreement at Denis’s work had been for the time away to be two years only.  Denis also has a huge family (he is the youngest of ten children) who are all clustered very near Louisville.   Lisa, Denis and the girls have a wonderful community of support there. 

We returned to making trips to Louisville for as long as we could travel.  After a while the stairs in their house were too much for Mary Ann to handle, so the last time we visited, we stayed in an extended stay motel.  That worked well.  The last trip there was less than a year ago.  I will say more about that and some other travels in the next posts on this blog site.   

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They are standing outside the bathroom door with their little legs crossed.  Maybe that is exaggerating a bit, but not by much.  Two of our day trips included Granddaughter Chloe.  On the first one, we headed out to the Rolling Hills Zoo outside of Salina.  We spent many hours on the road in doing that round trip.  It was worth it.  The Zoo is very large with spacious areas for the animals.  The habitats are very nicely done, carefully mimicking as much as possible the environment that would be natural to the animals in it. 

It was easy to negotiate.  There was a tram with a spot for the wheel chair.  The paths were wide asphalt walkways that were very user friendly, except for the hills that were rolling up and down between displays.   Chloe loved it.  Mary Ann was not so much of a zoo person, but she seemed to enjoy it too.  It was a warm, but pleasant day.  They had ice cream in the concession area.   Enough said.

On that trip we did not have time to use the other half of our ticket, the one for the large building with displays of stuffed animals, and animated people in appropriate environments.  We had heard from others who had been there that the displays were worth seeing.   We made a second trip out there with Chloe later in the summer of that same year.  It was on the second trip that Mary Ann needed to use the bathroom after we had spent an hour or so walking around the displays.  The women’s rest room was huge.  There was a long wall lined with stalls.  Clearly they were prepared for large groups. 

When we entered the women’s rest room, after getting permission from the woman at the ticket counter, Chloe stayed at the door to keep people out while I helped Mary Ann.  It turned out to be a major intestinal event.  A great deal of time was needed to accomplish the task.  I decided to go out and tell Chloe that it would be a long time and check to see if there was anyone who needed to use the restroom.  There was — more than anyone, lots of anyones.   It was an entire busload of Second Graders, all in need of using the bathroom.  The girls were huddled outside the door. 

I decided to ask Chloe if she would just stand outside of the handicapped stall Mary Ann was using while the girls used the restroom.  Mary Ann just sat there until they were all done and the teacher had given the all clear for me to go back in and help her finish. 

It was the bathroom needs that complicated travel, but after surviving the busload of Second Graders, we were somewhat emboldened to head out in the car. 

Over the years we had made regular trips to Northern Illinois where we both grew up and had family.   As the disease became more difficult to manage, we were not always able to make the ten hour trip.  The last time we made that trip, we broke it up by staying in a motel and taking two days to do it.  My side of the family had gatherings every year or every two years around my Mother’s birthday, even after she was gone.  MaryAnn’s side of the family did not get together often for major reunions since two of her brothers were deceased and the third Brother had alienated himself from the family.  Whenever possible we would get together with Sisters-in-Law and as many Nieces and Nephews as could come.  We enjoyed those gatherings very much, as well as the reunions with my Brothers and Sisters and their families. 

One special treat was getting together with Mary Ann’s three friends from Fifth Grade on.  Sometimes we would get together with spouses also.  It was always wonderfully entertaining to see and hear the four of them together.   Mary Ann laughed more in a few hours with them than she did in the year or years in between the visits.  One way or another, we would be sure that the four of them had some time without any of the Spouses.  I don’t know what they talked about, but that is most certainly in the “better not to know” category. 

The three of them came to visit Mary Ann here a number of times also.  All of us recognized the power of healing those visits had for Mary Ann.  No matter how much she had declined, when they came, some sort of switch flipped and she perked up, became alert and communicative.  The last time they visited was after she had been enrolled in Hospice.  I described that visit in an earlier post.  We all laughed.  She had the closest I had seen to a belly laugh while we  sat at the Baskin & Robbins. 

Whatever toll the Parkinson’s took, it did not take away family and friends.  Travel was not easy, but as long as we could manage it, we headed out.  Some were day trips, some were long trips.  There will be more to come in the next few posts. 

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