Returning to Life - The new normal.

We are at the beach.  Our 4 year-old Luc and 30 month-old Abi are asleep in the same bed, in their room.  GrandBe tucked them in and read them a story.  They love it here.  Of course, then they needed a glass of water.

Bons is sleeping with a smile on her face.  When she gets up in the middle of the night she looks in on her "kids", who will awaken her at 7AM by putting all four of their hands gently on her face and urging her to get up to play.

The smell of the black cherry wood smoking 2 pork shoulders is in the ocean air.  Lucas put on his special purple and black barbeque gloves and helped me arrange the charcoal and wood chunks in the smoker.  He had to do it just so, to make sure we have a steady temperature of around 212 - 220 F for 12 - 14 hours it takes to turn "Boston Butts" into tender, succulent pulled pork shoulder.  He did a great job.

After he helped me, Luc ran to the top of the dune 3 times to report on the height of the waves and the fishing boats on the horizon.  Abi came out on the screen porch and down to the beach when the hamburgers were ready to come off the grill.  I picked her up and we looked to see how many stars were visible in the early evening sky.  She loves to be up high in my arms and pointing to where the sun went down.  The horizon to the west had turned dark in deep purples with the last traces of red.  Abi went still for a minute looking at the horizon.

Bonnie is mostly out of pain, able to see, read, walk, drive and cook.  She still uses her wheelchair in the house some of the time to take weight off of her sore back.  She plays cars, colors and reads to the grandkids when they are here.  Bonnie fixes breakfast du jour: usually sausage and eggs or deep-dish dutch baby pancakes with jam.  Of course Abi has to help, with her stool parked hard by Bonnie's side at the counter.  Abi participates in every step, and asks"why" when there is some new ingredient or technique.  Bonnie explains in a voice that hums and sings.  Abi nods and the creation of breakfast and closeness moves along.  

When the kids are not here, and Bonnie is not at some doctor's office, or church function, she spends most hours each day writing in her office.  She has finished editing the first draft of the "story" section of our book; "How to Be a Successful Patient: Living!! with Chronic and Fatal Illnesses."  Bonnie's story of zig-zagging along the boundary of life during her prolonged stays at Stanford Hospital, Brigham and Womens Hospital, UNC-Chapel Hill Hospital, New Hanover Regional Medical Center Surgical Trauma Intensive Care Unit, and Duke Hospital and her months of rehabilitations at Youville Hospital, Durham Regional Hospital, and Coastal Rehabilitation Hospital, is currently about 360 pages. 

The second section of the book is on the domains of competence one needs to develop if one is to become a successful patient.  Each of these chapters are well-researched and outlined in detail.  I think it will take a week for each of the nine chapters.  The final section, a workbook of checklists, forms, and links to useful organizations and websites has also been well-researched and is coming along nicely.  We are deeply dyed with a passion to produce a book that is of lasting value to patients, families and friends facing chronic and critical illnesses.

In the meantime, I have been going to doctors to catch up on the "deferred maintenance" on my 61 year-old body.  I have a deep sense of fatigue most days and depression from time to time.  I have had a nuclear heart exam and stress EKG; a complete blood panel including some sophisticated cholesterol testing, and PSA tests and soon a sleep apnea test.  

I told the EKG technician that my wife was worried that she would lose her full-time care giver, and that I had to tell her the results of my test when I went home.  EKG techs are trained to be upbeat, and that ONLY a doctor can say what the squiggles on the roll of graph paper mean.  So she said "You did very well! ... after all we did not put you in an ambulance and send you off to the hospital."  This being the biggest heart testing facility in several counties, I speculate they send "customers" off in an ambulance more than once a week.

Bonnie laughed when I told her my evidence for my heart being fine.  We have lost track of the number of times I have taken her to a clinic for the usual tests or to a doctors appointment only to have the doctor INSIST that Bonnie be admitted to the hospital via the emergency room, which was normally an 8 hour process.

Thank God, our new normal is rebuilding our health, while we play with our grandchildren, write our book and rebuild our beach house.  This beach house was condemned after Hurricane Floyd in 1999.  We bought the house in 2002 and have stripped it to the studs and completely rebuilt it, piece by piece.  Only the pilings have not been replaced.  Our "30 year shingle roof" is 8 years old.  Now the roofing contractor guarantees that it will NOT LAST more than 2 years ... or 1 hurricane.  The shingles are fine, only the nail heads holding the shingles down have rusted off.  Along the ocean, buildings and materials are measured in dog years.

Central A/C units suffer the most from being on the ocean.  Our Central A/C ducts and Air Handlers in the attics were replaced 2 systems ago, and use the now-out-of-date coolant.  The outside Compressors / Heat Pumps are Tranes and only 6 years old.  And while "Nothing Stops a Trane", one of the outdoor compressors died of salt air corrosion that ate through an aluminum block where it hits a copper fitting.  The other unit is going fast.  

When we replace these units, I am having the coils coated with a "marine kit".  And I am installing 8 rainbird irrigation heads that will popup and rinse down the outdoor units everyday at 3 PM.  This should increase efficiency and reduce the salt corrosion.  We aim to get 10 years out of the new A/C units. 

In any case, the entire A/C system on both sides of the house has to be replaced this month, down to the last duct and vent.  I have whiffed traces of mold coming from the air handler and/or ducts.  I had swabs done on both sides which have confirmed my "diagonsis": Black Mold.  Since Bonnie continues to be immune compromised, black mold can create an infection that would spell the end. 

In the meantime, I am trying to find the source of a "small water leak" over the ocean window in our bedroom, that only shows up after gale force ocean storms.  Roof?  Window flashing?  Windows?  I am going to have to try to find the source of the leak using a pressure washer. 

Living on the front row of the Atlantic Ocean is like hanging 5 on a surf board for life:  It is exciting, very taxing and only for people with free attention and resources.  I wonder how long we will be able to keep up with the ocean.

I have another two pages of "To Do's" to get this house right for us and next summer's rental season. 

We have to replace or repair at least 4 pilings on which the house sits.  They are becoming wasp-waisted where they hit the sand.   Then we have to  replace 2.5 feet of sand that a hurricane storm surge washed out from under the house.  A beach house stays in place in direct ratio to the pilings "friction inches" with the sand.  Replacing the 2.5 feet of sand will be a good thing, but requires permits from the City, State and Coastal Area Management Authority.  Pilings and sand can only be replaced during months of the year when the noise will not disturb the nesting sea turtles. 

We have to disconnect the septic system and connect to the new Oak Island sewer system, which may come on line by January 1.  This will allow us to park 2 cars UNDER the house, and give Bonnie a wooden walk way to the stair lift.  She currently has to navigate in sand with her tiny toeless feet, which is a challenge.  I may even get my high end stereo system set up this year.

By the end of May 2010 we should have our book in condition to publish, AND have our once condemned beach house very much a home for us.

Now, IF the 2010 hurricane season leaves the house in place, next winter I am going to see about creating some raised-box landscaping.  Bonnie wants Birds of Paradise and I want Japanese Satsuki Azealas.  We shall see if we can find species that can cope with the temperatures and salt air.

My greatest joy is watching Bonnie play with her grandchildren.  Bonnie lived for these days and these days are here today.

/Daniel for BanD

Comments

[Sally]

What a miraculous post!

[betsy]

Hurray!!!!!!!! Nice to "hear your voice Daniel". love, betsy

[betsy]

Daniel, what you say about Bonnie living for her Grandchildren. Working with cancer patients who live long beyond their "expectancy"...this quality it the one single most factor---having something so powerful to live for not just "life itself" or "fear of death." I see it over and over. It's a hard one to talk about because if you do, it often gets MIS-interpreted that the opposite is true...that people who die don't have anything they care about or don't care enough. I don't think it's like that. love you guys, betsy

[Betsy]

I'm writing from the other side of the world now---sasebo, Japan where I'll be well into the new year. Saw a friend on before I left who is making her journey to the next plane. It is a blessing to see this when one's work has been done and preparation has been made so that this to is part of the journey of life! Hope to get an update soon. Don't think we're heard if Bonnie had her surgery? if you are back in N.C. or? I send plessings from the east. love, betsy

[Nuri Rossignol]

It sounds like your need to fix the beach house is more than just for practical reasons. You're also coping up with the situation, and it's good to learn that everyone's well. It would be wonderful to see pictures of the renovation. Thank you for this inspiring story.