Bonnie Recovery

Birthday Today

It’s a sunny 42 degrees in Boston today. This the first birthday I’ve spent in the north since 1989 (last year we were in North Carolina). I can remember many years of birthdays through the 1960s, 70’s and late 80’s when January 20^th would be a snow day. I’d often be off work and could spend the day by the fire looking out at mounds of snow. But this year it’s been as if the warmth has lingered along with my health. The calendar says that we should have mounds of snow now, just as my prognosis in October indicates I should be hospital bound and very sick. And here we are the sun and I, both bright and shining.

On days like this I remember how my mother used to call me to get out of bed: “Rise and Shine, Bonnie Jean.” I didn’t know until coming to seminary that she was quoting Isaiah:

¹⁹The sun shall no longer be
   your light by day,
nor for brightness shall the moon
   give light to you by night;^*
but the Lord will be your everlasting light,
   and your God will be your glory.
²⁰Your sun shall no more go down,
   or your moon withdraw itself;
for the Lord

will be your everlasting light,
   and your days of mourning shall be ended.

Tripping

This morning I woke up with more energy and enthusiasm than ever.  And then in the early afternoon the realization that tomorrow is “doctor day” hit me.  Both Daniel and I took long naps that we have come to recognize as anxiety naps. 

I have talked with the person doing my donor search and also the transplant coordinator.  They have yet to identify the “perfect” match, though one is very close.  They will be meeting on Thursday to discuss whether that person is really close enough.  It may be that we will be carrying on the search for another few weeks.  I am feeling good enough (when not thinking about tomorrow’s doctor visit) to believe that my blood levels will be up and that my health will good enough for a few more weeks.

I had a great call from a California friend this afternoon.  She asked if I’m anxious with all this waiting.  I’m not usually.  Right now I am leading such a wonderful life.  Friends come over for conversation and music.  I’m very much engaged in getting music put onto my new iPod (more about that later).  I certainly do not want to waste these beautiful “extra” days worrying.

Spring term starts next week.  I’m enrolled in an online course called “Life as Pilgrimage.”  The instructor leads sacred trips.  See http://illuminatedjourneys.com/    I am eager to get through this time of confinement so that Daniel and I can start to travel again.  Right now, I’m enjoying virtual travel.  I can remember ten years ago being very eager for High Definition TV so that I could go places I wouldn’t or couldn’t otherwise. And now I’m finding these virtual trips to be everything I imagined they might be, at least for someone like me who can’t move so easily. I’ve watched INSIDE PASSAGE, which is showing often on PBS’s high definition channel.  I sit in my platform rocker and enjoy the scenery and the commentary and I’m glad that, at least for now, I don’t actually need to move my body to do the Passage.  And I know when I do actually get on that Inside Passage trip, I will enjoy it more.

As spring term starts, I’m thinking back to last fall’s courses.  Seminary is a trip in its own way.  In one five page paper, I took on the question of God creating the world, and in the process, explicated my own creationist theology.  In another course, I was asked to write about the task of establishing and honoring pluralism and in doing that to articulate “Where is God in this work for you?”  In that paper I was finally able to find an answer for myself to my question of why The Incarnation came 2000 years ago (not earlier or later, as far as we know).   The great joy of seminary is the opportunity and excuse to do “theology in five pages or less.”  I’m attaching these two papers here not because they are great theology, but because they engaged me in thinking about the nature of creation and the mission of Christ… and I thought that you might find in them an invitation for you to do that too.

God and Creation Paper here Download godcreation_paper1_online.doc

Foundations of Chrisitan Praxis: Pluralism  is here:  Download bj_foundations_3_online.doc

(note the foundations paper is a big file because of one big picture in it).

Our Superbowl Pre-Game Show

The Sunset!

Hope that you are enjoying the game.

Inner Pilgrimage

I’m sitting looking out at a churning ocean, calmer than yesterday, but far from the “lake Atlantic” we have had for most of our time here in N.C. I’m thinking of all our friends in N.E. with two feet of snow. We are happy that we don’t have the necessity of driving in it. Somehow it seems like a metaphor for our life right now… we are escaping the storm, but mindful that we are on the journey and journeys inevitably have storms sooner or later.

Back in November I was (foolishly) eager to get on with the treatment and the hospital. It was not that I was looking forward to the transplant itself, nor even to a “cure” and the vista of life that a “cure” would open for me. Rather, it was that I was looking forward to being on the pilgrimage.

Daniel’s Birthday

It was quiet (compared to mine), but Daniel reports it was one of his best.  I’ve put a photo album on this BLOG called “Daniel’s Birthday” with pictures of the party, and also some pictures of Zac with one of his GrandBee’s (four) trains. Check out the link on the right under the calendar.

We celebrated in many ways.  Daniel got phone calls from distant friends.  We toasted that we are able to stay at the beach until Feb 25^th.  We had Jennifer, Scot, Zac, Luc, and Scott’s parents Linda and Ernie for birthday dinner on Saturday.   

Daniel cooked incredible London Broil and short ribs; amazing stuff.

Zac and I went shopping for the book that Daniel requested for his birthday.  Zac blew up twenty balloons to decorate the house.  He wrote a special card for his GranDan and helped me wrap packages.

Daniel made two requests for his birthday: a copy of The Elegant Universe and that I would post sermons I’ve done over the past three years onto the BLOG along with description of the context of those in my illness and recovery.  I’ve been working on the second request and will be create that ‘sermons’ post this week.

In the meantime, we are enjoying the sunsets, quiet, and mostly our love for each other, our family, and our wonderful friends.

He remembers that we are dust

I'm writing from our oceanside porch where I am taking a "Porch Pilgrimage" on Ash Wednesday.  It was  cold 60 degrees in the morning, then sunny almost 70 degrees, finally a chilly and windy late afternoon.  I had to cover up.

I don’t remember exactly when Ash Wednesday became so important to me. I think it must have been in 1999 when Ash Wednesday was February 17^th. That was a time I was “commuting” between Palo Alto and Houston. Daniel was staying with Mom constantly as her hospice care.  Daniel and I started this pattern on January 17^th, the day after Jennifer and Scott’s wedding. I had turned off my cell phone on the 16^th; I knew that I might get a call anytime telling me that Mom was now critically ill and in the hospital. But January 16^th was Jennifer’s Day. I did not want any call that would distract me from my daughter’s happy wedding day. When I turned on the phone Sunday morning, there was the message. Indeed, Mom had gone to the hospital, but the doctor’s were suggesting hospice. It was as if she knew that we had tickets to fly from NC to Texas. I had arranged a connection in Houston on our CA-NC flight . We had hoped that Mom would be able to attend Jen's wedding, but a month before we all knew that couldn’t happen, but I felt that I needed to be ready in case of a miracle. And so we were flying back through Houston; it didn’t take us long to decide that we would skip that last leg of the trip. We would stay in Houston. After a week in Texas, we knew that Mom would live for a while, and so we worked out a commuting schedule so I could do the work on a project that seemed critical at the time while being with her half the week. I would fly to Houston after work on Friday and return early the following Tuesday morning so that I could do a week’s work and yet be with Mom.

Gratefully Dead - Sermons

  Ash Wednesday Sunset - magnificently blue, then finally red
This is the first of three postings on March 1  This one is from the end of the day; two postings "down" is the one from the morning.  That morning post explains we are still in NC, not in Cambridge for a doctor's appointment.  The posting below this one has some of autobiographical musings about the meaning of Ash Wednesday for me.

The post you are reading has links to the sermons I promised Daniel I would put here soon after his birthday (Feb 10).  Ash Wednesday is an appropriate time for these since they are all about my understanding of death and my experience of living with leukemia, one of those diseases that doctors now call “dire” rather than “terminal.”

Perfect Day

I knew it, and the weatherperson confirmed it.  Today was WAY to beautiful to be in the hospital.  It hit 74 degrees in Boston. 

I walked to Harvard Square and saw these flowers, the first signs of spring here.  I had a mammogram (all ok) and then got my THIRD "pre-chemo" haircut.  I guess the lovely person who cuts my hair really believed that I am now pre-chemo because this time she cut my hair really short.  It looks a bit like Zachary's, or maybe Ryan Seacrest's.  (Pictures of this haircut later).

Daniel and I are having a quiet weekend, fininshing up things. I expect I'll start to pack tomorrow.  (really... I will)  I went for a long drive today with the excuse that I was going shopping. 

Living Holy Week

It is the first day of holy week.  Holy Week is a penitential time for Christians, a time when we remembered that Christ died for our sins.  It is sometimes easy to think of Jesus Christ as a whimpy sacrificial lamb.  Jesus urged us to be humble and not boastful.  Yet, he was anything but meek. The Bible gives us the clear picture that Jesus was defiant:  when he saw sacrilege and injustice, and he spoke out against it, even though it led to being ostracized and ultimately killed.

Yesterday I saw a story on Pat Robertson that aired on the NBC news show Prime Time.  When asked questions that pertained to a more open interpretation of the Christianity, Robertson spoke of himself as a “messenger” – he only says what the Bible says.  As a messenger, he claimed he can’t change the message.  There were plenty of scenes of him in his lavish estate; while the voice over mentioned his $2 Billion sale of the Family Channel to ABC, but they didn’t ask him where the money went.  They never asked him about his dealings with tyrants in Zaire and other African states.  If there was an implication that Robertson’s is not a Biblical message, it was very subtle.  I could not help think of Robertson when I read today’s Gospel reading in which Jesus is turning over the tables of the money changers:

Mark 11:15-19

Then they came to Jerusalem . And he entered the temple and began to drive out those who were selling and those who were buying in the temple, and he overturned the tables of the money-changers and the seats of those who sold doves; and he would not allow anyone to carry anything through the temple. He was teaching and saying, ‘Is it not written, “My house shall be called a house of prayer for all the nations”?
But you have made it a den of robbers.’
And when the chief priests and the scribes heard it, they kept looking for a way to kill him; for they were afraid of him, because the whole crowd was spellbound by his teaching. And when evening came, Jesus and his disciples went out of the city.

Last year at EDS, Holy Week focused on Jesus as the man who called for change and died because of his stance for the poor and against the arrogant.  Holy Week last year fell in the third week of March so that the dates fell on the forty year anniversary of Martin Luther King’s Montgomery March. Here is the Monday Morning Prayer Liturgy that incorporates King’s words and calls for an end to “normalcy.” I am attaching the liturgy here to invite you to think of the revolutionary aspects of this Holy Season.

Download holy_week_monday_liturgy.doc

Red Sox

Revised  4-12-06

Zachary at age one with Fred the Baseball Boy

Zac with his T-Ball team.

Yep, he is the one on his knees, ready to get back in that game.

What a difference 3.5 years can make!

These pictures of Zac are for me pictures of LIFE since first diagnosis.  In July 2002, my doctors tried to talk me into going immediately into the hospital for chemotherapy.  We said, "not yet" and headed for Zac's first birthday where we took this picture of him and Fred, the Baseball Boy that Mary Newman gave him.The second picture of our T-ball Player shows what he is like now.  A lot of life and love went into growing that boy, and Daniel and I along with his parents, grandparents, and friends, have enjoyed it all. 

When I look at the second picture I see how much he still has to grow and I'm more committed than ever to be there to cheer him, his brother, and his cousin on... along with who knows how many more young players that may show up in our future. 

Zac let me take Fred the Baseball Boy to the hospital in Stanford and let me bring him to Boston to keep me company while he can't be here. 

Jackson is already getting to know Fred.  Here he is taking Fred for a ride in my hospital room   

Yesterday the Friends of Dana Farber brought me a Red Sox cap, some cracker jacks and other reminders of the opening home season which started yesterday.

Fred is looking good today in his Red Sox hat.

I plan to take over the hat when I shave my head.

As you can see, I am feeling better after recovering from my 102 fever over the weekend.

Poem of the day:

If I didn’t have a building blocking the way,

I might be able to see Fenway.

It’s less than a mile from where I’m confined;

yet I’m here, not there; to this, I’m resigned.

Maundy Thursday

After Ash Wednesday (which opens Lent), Maundy Thursday (which closes Lent) is the day in the Christian Calendar with most meaning for me.  I honor the importance of the Big 3 Days (Christmas, Good Friday, and Easter) throughout the Christian world for they mark the major milestones of Christ’s life as a human. Yet, Ash Wednesday and Maundy Thursday mark major milestones of Christ’s life IN ME. 

 

I think of life as a journey, indeed a pilgrimage because it is a sacred. The roads are well traveled and offer companionship; so we travel with others and from time to change the company we keep. At the same time, we are each on our own pilgrimage; no one’s pilgrimage is like anyone else’s. From time to time on my pilgrimage, reality gets very clear and time pauses so that I feel the Cosmic Jesus in my being. 

 

I was raised in what Episcopalians call “Low Church.” “Low Church” congregations in the 1950’s restricted their attention to the Big 3 Days. I can remember knowing when it was Lent (Episcopalians do not say “Alleluia” in our prayers during Lent); I can’t remember ever going to an Ash Wednesday or Maundy Thursday service. I know for sure that we never had a foot washing service nor a Maundy Thursday Vigil. 

Who Will Roll Away the Stone?

MARK 16
When the sabbath was over, Mary Magdalene, and Mary the mother of James, and Salome bought spices, so that they might go and anoint him. ²And very early on the first day of the week, when the sun had risen, they went to the tomb. ³They had been saying to one another, ‘Who will roll away the stone for us from the entrance to the tomb?’ ⁴When they looked up, they saw that the stone, which was very large, had already been rolled back.

The verse from Mark read on Easter morning presents one of the great puzzles in the Bible.  Here are three perfectly intelligent women going out to do a ritual they have no doubt done before, but this time with a twist.  Even before they set out by themselves, they know that the body they will prepare has already been placed in a rock cave and sealed with stone too heavy for them to move.  As they travel in that early morning light (obviously too early for the big guys to be out), they ask each other with curiousity, but without hesitation, who is going to help them to get into the tomb.  They travel in faith.

Margaret Irwin's last Easter sermon at All Saints' Palo Alto bought my attention to this amazing puzzle, one we read at least once a year and never pause to consider:

Do I have the faith to go to the stone -- to go on with my life without every question answered ahead of time -- without knowing "Who will roll away that stone?"
Thank you Margaret for that wonderful question that pointed me look anew at my faith.

Here is a picture of Margaret sitting on the front row at the installation of All Saint's new rector. (remember the one I missed going to in California?)

Happy Easter. 

I'm now doing a little hike out of my hospital room to see if I can find a place to watch the sun rise over the Charles this morning -- a small act of faith that I'll find a window. 

 

Bright Sunday

Actually, it isn't too bright out today.  But today is "Bright Sunday," a custom I learned about at All Saints' Palo Alto.

Background:  “For centuries, in Catholic, Orthodox, and Protestant countries, Easter Monday and “Bright Sunday” (the Sunday after Easter) were observed by the faithful as “days of joy and laughter” with parties and picnics to celebrate Jesus’ resurrection. ”Parishioners and pastors played practical jokes on each other, drenched each other with water, sang, and danced. It was a time for clergy and people to tell jokes and to have fun.  The custom of Easter Monday and Bright Sunday celebrations were rooted in the musings of early church theologians (like Augustine, Gregory of Nyssa, and John Chrysostom) that God played a practical joke on the devil by raising Jesus from the dead. Easter was ‘God’s supreme joke played on death.’

Attached is a sermon I did last year at this time to introduce the Bright Sunday practice to others at EDS.  It is a joke filled sermon. 

I hope that it is readable.  I continue to have problems reading; my left eye doesn't want to focus with my left.  This will eventually go away with other chemo effects, though I'll probably have to have new glasses, again.    I'm feeling a bit better and hope that last week's low time is now behind me.

Download bright_sunday_crculate.doc

Looking Back at My Week

Above me, wind does its best

to blow leaves off

the aspen tree a month too soon.

No use wind.  All you succeed

In doing is making music, the noise

of failure growing beautiful.         

                  Bill Holm, "August in Waterton, Alberta"

      As Daniel observed in an entry he wrote earlier today (see the other April 30th post below), I have had something of a sad week. This morning I had to come to terms with how much of my anxiety is “evidence based” and how much is my own mind disturbing me.  I have lots of excuses for anxiety now.  After 26 days in confinement, I am a bit stir crazy.  THE TREES ARE BLOOMING AND I’M STUCK HERE.  Moreover, they cut my anxiety medication in half because of concern that another drug I’m taking would increase its effects.  Now really, can one possibly get too much anti-anxiety effect in a situation like mine?  (Today I finally realized that I could ask for, and get, my full dose.  Duh)

Last Sunday was underway in a wonderful way, a visit for Eucharist, presided over by advisor Professor Joan Martin.  Berkeley and Roni came to share the Thursday Community Eucharist.  Sue, Susan, Katherine, and Mary make sure that I get Eucharist almost every day. Donna came this week.  I feel that my devoted friends somehow stretch EDS across the Charles so that I can continue as part of the community. My daughter Deb comes to visit.  And this is only bit of the company and good times I've had this week.

     Medically, the week didn’t start off well.  I got a headache from doing last Sunday’s post.  I was still not focusing then and over strained myself from over-concentration.  They couldn’t give me any more Tylenol because it might “mask an increase” in my fever. Fever had been an everyday occurrence for me for two weeks. The good news here is that they can give the “big drugs” even for something as minor as a headache. 

Going HOME Today

I Imagine how I'd feel if this very day the powers that be announced a complete troop withdrawal from Iraq.  I'd be happy.  I'd say 'it's about time.' And I would wonder if the pain and expense had been worthwhile.  I'd pray for the best.

I'm going home today and that is about how I feel.  I'm not leaving with the 500 neutrophil count that had been the objective.   Preliminary biopsy of bone asparate indicates that I have about as much leukemia as I entered with 36 days ago. So what of all this pain endured by me and my near ones, and how do we justify the expense?  I'm praying for the best.

As you know, I was sent home from Stanford after two months with much the same results from a bone marrow biopsy.  Since my kidneys and heart were so damaged, I could get no more treatment.  And I went on to a record remission.  My body's history indicates that it simply takes more time to "normalize."  I believe my higher power and the prayers of people who love me bring about that normalization.

I cried a lot yesterday and today of feel a spiritual renewal.  Katherine, the hospital chaplain here points how how tears are a form of baptismal renewal.

I have a lot of packing to do to get out of here today.  I've already told my nurse that I'd like room 12 (bigger) if and when I come back for more chemo. 

Zac, Luc, Jen, and Scott are scheduled to come to Boston tomorrow.  Those boys are my PROVEN healers. 

Stay tuned, in good cheer.   Love Bonnie

Back to writing

Last Wednesday Daniel and I celebrated a week of my being home.  That is one week or TWO trips (by Daniel) to Trader Joe's for essential supplies such as Blood Orange Soda, Maple Pecan Clusters, Cream Cheese and Lox.  I have none of the food aversion that characterized my hospital stay.  As long as I get a healthy dose of caffeine, I'm fairly perky.

Since passing that one week milestone, I’m turned my attention to writing, especially to completing my spring courses.  I’ve written and turned in the final paper for the “Life as Pilgrimage” online course.  It feels great to be complete, though I will miss the regular correspondence we enjoyed in the course.  The assignment was to consider “skills for discovering meaning in the events of our lives” using Anne Lamott’s Traveling Mercies as a resource for articulating these skills.  Mostly I wrote about keeping this blog.  I see now more than ever how essential it is that I write what is honest for me.  When I write about incidents where others have been present, I consider what they would say about that event and seek to be honest in telling of the incident.  The challenge is to write what is honest for me in interpreting that event.  Of all the therapy for healing I’ve had over the last six months, this challenge to honesty may be the most important to me. 

Revised: phone problems

Here's an update to my post earlier in the day.  Daniel is my hero.  The local Sprint repair folks told him it was "impossible" to unlock the phone, but "impossible" is only a challenge for him.  He kept pressing them until they saw the challenge in it.  After about an hour they found the problem and got it fixed.  So, my phone is working now.  However, the Sprint insurance folks seem to be unable to stop their plan to activate another phone and send it to me on Tuesday.   I'm receiving phone calls now, but they may turn off this phone at any time.  ah well.

Here is the original message:

My replacement Sprint phone arrived but none of the passcodes they sent me will unlock the phone.  After thirty minutes of talking with Sprint's phone insurance company, neither Daniel nor I could get them to send it faster than "overnight" --which means Tuesday delivery.  Somehow their systems would not let them send with Saturday delivery since the first phone was not sent for Saturday delivery.  Daniel will take this phone to a Sprint store in hopes that they have magic to unlock it.  As for now, we have no clue now about when I'll have a phone.  I'll post in right hand column when I have it turned on.

It is a puzzle to me why I get more upset over the jerkyness of corporate behavior than I do my illness. 

Being Upright

This has been a good week of lessons and visits.  Daniel and I are both feeling prepared for my return to Dana-Farber. They are holding a larger room for me on the same floor where I was before. I am very tired most of the time and sense it is time to give chemo another try. 

Jennifer sent pictures of Zac and Lucas in their School’s Spring Presentations. Here is Lucas, not quite seven months old.  He was dressed for his first Spring Presentation in an Hawaiian Sea Gala.  Yes, the picture is a bit of a fake because the second after it was taken, Jen has to take his hand so that he wouldn’t fall.  This baby of course had no notion of standing up when we left North Carolina in March.  And now, his human instinct is calling him to be upright.  Our biology needs us to be upright.  I know that I’m facing many days when I will not want to move from a prone position, and that my biology needs to be upright. I’ll smile at this Lucas picture and haul myself out of bed.

Zac has now graduated from “Pre-K” and will be going to public kindergarten in the fall.  He told me that he wore a hat for graduation. He didn't like the graduation itself, but that he had fun at the ice cream party with his frinds afterward. 
Once when I was buying him books, he pointed to the “Pre-K” books as the ones which were right for him.  I asked him what Pre-K meant.  He said he didn’t know (though he was certain those were books designed for his age).   How often I know something fits me with little understanding of what it is. 

As Zac and I were talking on the phone this week about his graduation, I apologized for not being there, but asked him if he would come to my graduation in a couple of years.  He said he “probably could,” then asked what I will be graduating to (as he is graduating to kindergarten).

Zac and I talk about God when we are together, and it was tempting to say that I was graduating to help do God’s work.  I knew he’d ask me what was God’s work, and this could start a conversation too philosophical to have over a cell phone with a nearly five-year-old.  The question lingers with me: what is God’s work that I’m preparing to do.  Looking for a simple response, I told him that I would be graduating to “recess.”    He asked me what I do at recess.  I told him I swing and talk with my friends.  With words of utter disbelief he asked, “You swing?”  He knows when I’m fooling him, and was not going to take that as an answer.  And so, I told him that I “talk with my friends.”  He took that as an answer, but not a very satisfactory one.  And again I linger with the question what is recess for me?

This week I had lots of good visits and talking with my friends; I even got to go to visit a couple of friends who’ve recently purchased Gallo speakers like ours with Daniel’s help.  Berkeley Johnson came by with his banjo to bring me a serenade.


   

Deb, Ryan, and Jackson walked over on Sunday afternoon and surprised me when I got home from Church.  Jackson (whose not yet 18 months) is about the size of a three year old now and loves to chatter away.  He continues to be interested in music and headed behind the sofa where he knows we keep his piano.  He gave us all a rousing concert of Jack-music. 

Day Pass

The doc has signed for me to leave this hospital for a few hours this afternoon.  On Monday, Stone said that he would approve, assuming I had no fevers or other apparent illness.  When the fevers hit on Wed, I lost hope of the possibility.  And yet they were able to identify the little bug that was up to mischief and within 24 hours of the treatment, I was once again fever free.  I got two units of blood and one of platelets yesterday and I’m feeling strength from that.  Even a few hours away will help me remember what trees look like and give me the opportunity to use video Skype to call Zachary and family.  I’ll also get to see my friend Mary who has a new knee.

I woke up to bright blue skies this morning, after a week of rain in Boston.  Looks like a good day for an outing.

Today is Trinity Sunday.  It was a special Sunday when I was young because our parish was called Trinity, and that was the day Bishop Hines came to visit us. Last year I wrote a sermon for Trinity Sunday.  Download bjohnson_trinity_circulate.doc .  Writing it was way for me to explore relationships within families.  The beginning also has a brief history of the concept of Trinity, which many people find puzzling.

My phone was not working yesterday for the last round of switch arounds.  I should now have stable working service on my cell phone (650-324-3816).  Just as my phone problems cleared up, I find that I have an email problem.  Yahoo insists that I upgrade, but in two tries I’ve not bee about to download the new release.  I guess this is the best possible day for me to be going home so that I can be broadband long enough to get my mail working. 

This is the first day since Tuesday that I’ve even wanted to look at my computer.  I am way far behind on email.  I’m so grateful to Daniel for keeping up what’s going on; he helps me find humor in the worst of circumstances.  I continue to think of my journey as one on a tightrope.  I had a little slip this week, but I’m still going. 

Furloughs

Daniel's lovely June 17th post says it all about what's happening with us these days.  We are just unbelievably tired.  Most of my furlough time is spent on the sofa, enjoying the light from the French doors behind me, and maybe watching Sunrise Earth in HD on TV.  Now that my red blood counts are in low normal range, I hope to be getting more energy.  I suspect that it is the suspense of not knowing what's going on inside my bone marrow that contributes to this tiredness, both mine and Daniel's. 

On each furlough we do something with friends or outside.  Last Tuesday at our EDS neighborhood picnic, I tried to find a "Hot Spot" that would give me enough bandwidth to have a video conference with Zachary.  There are a half dozen of us who have wireless networks around that yard.  I managed a short video contact before giving up.  Lest you think from his last message that Daniel has lost his inclination for kidding, please regard this picture of us.  I'm working diligently to get Skype connected and Daniel... well, Daniel is being Daniel.

BK Hipsher took these pictures of us.  Here I am trying to get my Zac in video communication with the EDS kids. We like this picture with the light alot; could that be an angel amongst us?  I took this picture of BK being very much BK in one of her rare moments of relaxing.
 

Daniel says that I am managing the rehab of a little rent house my Mom left me in Baytown.  My cousin, Claudia, is the one who is managing the process of bringing back a house that has really declined to be a wreck. I won't go into details of all that work! Because of all the construction and rehab going on in the Houston/New Orleans area, no sheet rockers were available.  Daniel asked our friend Joe to go to Texas and do the rocking.  Here he is talking with Joe from the restaurant where we went yesterday to get a little Boston atmosphere.  I was inspecting the construction detail of the restaurant, which was once John Hancock's Counting House, while Daniel was talking with Joe about the detail saving the little Baytown house.

Furloughs are fun, and now I'm off for my fifth one.