A Bittersweet Birthday

I just re-read my last post, and even then the signs were pretty strong that there was "trouble in paradise."
Over the weekend, I had to come to terms with the fact that I am not capable of taking care of Stu properly here at the Cottage.  His needs are just too great for a home setting.  Wow, what a blow------although it's a great relief to no longer feel that I should carry the load, it's also very very sad to watch the dream hit the wall and shatter.  But then, if it was not meant to be, it's not something to hang on to.  I would rather face reality than hang onto a pipedream.

All of my trusted advisors (and there are quite a few key people) are in support of my decision.  Even Stu, as unhappy as he was to be taken back to a place that was never his favorite, understood that it was too gruelling, and even in some ways unsafe.  It was also difficult for him------one unexpected difficulty was how hard it was for him to adjust to having me as one of his caregivers.  I was prepared to tough it out and deal with the sleep deprivation and learning new skills, but had not fully appreciated what a difficult paradigm shift it was for him.  Hard enough to be handled by professionals, much harder to be cared for in that way by your wife.

So this morning (my 57th birthday, by the way----Stu turned 69 on Sunday) I sadly re-admitted Stu to Laurel Hill.  We are investigating adult foster care homes in the area-----that may be a do-able alternative to our original plan.  

There is a lot to write about in this situation, but it's late and I'm tired.  I look forward to taking some time to process with you all here on the blog.  So many people have wished me a happy birthday today------and you know, really, it was.  Yes, there were tears, but there is also comfort in recognizing a bigger reality than you had counted on.  And I get to sleep tonight!   That's my idea of celebrating! 

Until next time-----who knows which way this story will develop next?  

God Knows!

The Dark Side

After Friday's optimistic post, it seems only right to report on the dark forces I've been facing----ironically, much of it has hit right after that post!  I am not superstitious, but it is kinda uncanny.

While Stu was in the nursing home, there was often a nebulous anxiety that would attack him, making him fretful and needy.  Also some kind of pain in his bottom that made it excruciating for him to sit in his wheelchair for any length of time.

My hope was that with a fresh atmosphere and a state of the art wheelchair, these obstacles would lose their grip on him----or at least we could make some kind of progress.

Last night I had to seriously wonder if that will be the case.  All the old nursing home symptoms came at me in full force, making the night sleepless and stressful.  I realized how different our perspectives were----to me, this is a place of recovery and rehabilitation.  To Stu, it is (according to his behavior) a place to be catered to.  He does not want to take responsibility for his needs----he wants to be waited on.   Big sigh------that is not going to fly, I'm afraid.   After consultations with some trusted counselors, I have made the boundaries clear to him.  It's also something I'm alerting my caregivers about-----kind of an interesting byproduct of this whole adventure.  There are five caregivers in all, and if nothing else, they will be getting an education on the difference between caring and co-dependence:-) 

Souls are mysterious.  Sometimes you have to watch someone you love walk right into an abyss, and you are powerless to prevent it.  I would wager that many of you reading this have your own heartbreak along these lines.   How are we to bear this, I wonder?   It seems to me that with each heartbreak that comes my way, my best response is to accept it, let it hurt, let God carry me through it.  "Thy will be done" says the Lord's Prayer.  It's what Jesus said in the Garden before his crucifixion.  It's the only sane way to walk through life.  "Yea, though I walk through the valley of the shadow of death, I will fear no evil, for thou art with me, thy rod and thy staff they comfort me."

We are at a crisis here in the Cottage-----we will see which way the road turns.   I'm grateful for all of you who read my posts, who travel this road with me.  I will keep you posted.

Sue

Home

Just picture me right between Stu and Shayna----someone had to take the picture:-)

So, the transition from nursing home to cottage turned out to be an all-consuming effort for the first ten days.  And why not?  I once read about an experiment in which people were given glasses that made everything appear upside down------after several days their eyes had adjusted and the world once again registered as right side up......until they removed the glasses.  Then their eyes had to do the same flip flop.  What I get out of that is that something in us is tuned to see things right side up, and even when turbulence seems to turn our world topsy turvy, given a little time, it will right itself.   And so I find it to be.   

Wed., Feb. 29 was the official day of discharge.  The plan was that the Translink van would pick us up at 11:00 a.m. and transport us to.....home!  I was skeptical-----I expected delays and glitches.  But I was wrong.  Everything went without a hitch.  Despite snow in the morning, storm warnings, and a million details that all needed to dovetail properly, Stu was actually wheeled into the transport van in his new power chair right on time.  I went ahead in our van, hoping I could get there with enough time to whip out my camera and catch his expression when he was escorted into the new place.   Sad to report, the video I tried to take did not turn out well:-(  You will have to let my words here paint the picture.

What stands out for me was the quiet.  Once the driver and the wheelchair technicians had departed, it was just Stu and me.  The caregiver was not scheduled to be there until 1:30, so we had almost two hours to just soak in the experience of once more being together under our own new roof (thanks, John!)  

Stu had no comment to make at first.  I wondered if he understood what had just taken place.  But as the minutes ticked by, his eyes started to take in old familiar objects, and bright new walls.  He started to warm up.  "This is beautiful, Sue.  It looks like a little gallery".   Well, yes, Stu, it does-----a little gallery full of your work.   We had a cup of coffee together.  I brought in the sandwiches I had made for our first meal together.  It was humble, and quiet, and homelike.  A sweet beginning to a whole new way of life.

The next few days were a whirlwind of new tasks, new people, new skills to master  (I am finally, after ten days, gaining some confidence in the art of changing an adult size brief------not a skill I had on my list of "want-to-learn-how-to-do-this!")  I am also getting very proficient in the complexities of getting a large man out of bed in a hoyer and into his power wheelchair.  Don't try this by yourself at home!  I'm blessed with some excellent caregivers, and with their help, good nature, and encouragement, I am coming along.   
Is it exhausting?  Yes, sometimes.  Is it overwhelming?  Yup.  Is it rewarding?  Absolutely.  Tonight, before turning out the lights in his room, I read a chapter out of one of his favorite books "I Promise You a Crown" by Julian of Norwich.  He soaked in every word-----somehow, at the nursing home, he just couldn't concentrate well.  I'm thinking that the steady flow of love, attention, good food, music, color, and visitors are steadying him slowly but surely.  He is still weak, sometimes fretful, insecure------but also more alert, funny, and more rested.  We'll see how this all shapes up.  For the time being, we are holding our own.  Thank you all for your prayers.  I hope to find time to blog more regularly-----living with a severely disabled person is a rich subject, I think.   For now, I'd better head to bed-------who knows when I'll be called on tonight?


Until next time


Blessings from the Cottage on Coutant!

 

A Long Obedience in the Same Direction

So, you ask, what is happening with the plans to bring Stu home?
Well, we obviously didn't meet our goal of a Christmas homecoming------but the work is being accomplished, one bit at a time.  There is now a sturdy roof, the walls are finished and painted, there are doors front and back.  We have only to install the wood laminate floors throughout, finish  the counters in the bathroom, install the sink and toilet, and do some finish work around the doors.  We, I say-----I should say Jerome, my intrepid Super Son (pictured is my Happy New Year card to him), and the men he has gathered to help him-----John Lingafelter,  Tim Kasdorf, Jim Chandler.   These guys have volunteered valuable time and skill, and there's no way to thank them enough.  I will leave the rewards to God, I know he'll bless them in ways I couldn't imagine.  Once the work on the cottage is completed, it will be time to move furniture in and set up house-----I have told my transition coordinater, Eileen, that when the floors are in, I think we can start ordering the equipment that will be needed for Stu's care.  I will also need to start interviewing caregivers for the help I'll be needing.  It will be  a big transition----I pray daily for strength and wisdom to navigate this next stage of the saga!


This morning I was reflecting on the on-again off-again struggle I have with a sense of urgency about the project.  December was a rough month for me because I was so sure that it should be done before the end of the year.  And I was absolutely wrong.  That was hard.  But I have to say, this recent wrestling match with God brought something into sharper focus for me.   Here's what I wrote this morning:


"Lately, it's occuring to me that good things take time to develop.   As I watch the skilled workmen do their jobs, I see that they have a deep respect for the principle of laying down a layer and giving it time to breathe and settle before adding the next layer.   The mud-and-tape professional who came in to work on the walls was very particular about conditions, drying time, etc.  He knew it doesn't pay to be in a hurry.  I myself took a page out of his book when I laid some vinyl tile in the bathroom.  I had to be scrupulous about removing all dirt and debris, and making sure the surface was level.


I can see that this time before Stu's homecoming is foundational----like a meticulous Craftsman, I see you clearing debris, smoothing the surface, preparing with great deliberation.  You know what you are building;  I can only guess.  I spent all last month pleading my case with You, frustrated by your timing, sure that it should go faster.  I am wrong.  (I use the present tense because I know myself to be still impatient by nature.  For now, thanks to You, the chastisement is fresh in my system.  Grateful for that!)"


To finish up here, I stole the title of this blog from Eugene Peterson----who wrote a book with this title that has been very refreshing reading for me recently.   So far, my favorite excerpt from that book is this one, from the chapter on Worship:  "Faith is not a precarious affair of chance escape from satanic assaults.  It is the solid, massive, secure experience of God, who keeps all evil from getting inside us, who guards our life, who guards us when we leave and when we return, who guards us now, who guards us always."

Until next time!


Sue

Wheelchair Dates:-)

Glad to be here!

No, it's not a sideways picture

Since before Christmas, Stu and I have been traveling twice a week to Medford for power wheelchair training classes at Providence Rehab.  Who knew there were such space age features in a power chair??  Sheesh!  The one they're building for Stu has bells and whistles I never would have imagined----especially a handy dandy switch that tilts the wheelchair all the way back to a full reclining position!  I know, it's almost unnerving, isn't it?  But it's a Godsend for Stu, who has lower spine pain that prevents him from being able to sit for long periods in a standard chair.  In the power chair, he is so much more comfortable.  And it has been wonderful to see him engage with his trainer, Leslie----finally, something that allows him some control after so many months of utter helplessness!  He is both encouraged and exhausted at the end of the hour lessons----it's hard work re-training your brain!  He has noticeable neglect on the left side.  Today, Leslie wanted him to read a sign on the way to the cafe in the hospital, and he could not recognize the words on the left until she pointed to them.  He tends to drift to the left, too, as he putters along (always at the slowest speed)   Leslie is P.A.T.I.E.N.T........extremely patient.  She waits for  information to sink in before she moves on to the next activity.  She is also funny, good humored, and upbeat.  Stu loves her.  It does my heart good to see him getting such good care.

For me, these "dates" take up the better part of the day.  I get there a full hour before the transportation arrives, so there is time to visit a little with Stu before getting him dressed and ready.  I bring jeans and a nice shirt, a hat, a warm scarf.  For at least this part of his day, he gets to look like a mensch.  No sweatclothes or hospital gowns allowed!  An hour before the appointment, the transportation arrives.  This has been a whole oddysey in itself, just getting familiar with the companies that provide this service.  I know all the drivers by name at this point: Steve, Paul, Rob, Russ, Crystal.......there are more, but you get the idea.  One driver was a pro-wrestler in his former life, broke his back while performing, and (long story short) gave his life to Jesus.  He was, against all odds and predictions, healed of his injuries, and he considers his work now a ministry.  It was fun talking to him.   One driver is a Disneyland fan----his vehicle has Mickey Mouse memorabilia everywhere in the cab.  I find myself enjoying them all.  During these rides, Stu sits quietly in the back of the van, in his wheelchair, which is secured with some heavy duty looking straps and metal fittings.  Sometimes I sit in the jumpseat near him, if the van has one,  and sometimes we hold hands.  It's a date, after all.

It takes at least six weeks to build a chair like the one that's been ordered for Stu.  But, miracle of miracles, we've been promised a loaner chair for the interim.  Not sure when it will be delivered, but soon, I'm told.  I won't say "Can't wait"-----since a lot of this saga has to do with waiting----but certainly it will be a grand thing when Stu has this kind of mobility.  (Just a little factoid----Leslie informed us that a couple of her clients who live as far away as Eagle Point actually travel to the Rehab Center by back roads in their power chairs.)  Wow-----the adventure continues!

Leslie helping him navigate the halls

Waiting for his appointment.  

Reflections on a Haiku

 This is for all of you facing a not-picture-perfect Christmas (I know you're out there!!  It's not just me!)

A few years ago,  a little haiku came to me as I was contemplating contentment

                            Contentment is my surfboard,

                                     Skimming turbulence;

                                             Exhilarating!!

Contentment, I think, usually conjures up images of a cow in a field, chewing its cud.  No worries.

But I find that it has a much more dynamic character, actually-----the character of Christ!

So this morning, when I awoke to a Christmas Eve with the same turbulence I've been facing since the end of March, I had to add a line to my haiku-----if contentment is my surfboard, discontent is my riptide:-(

Here's what I wrote in my journal:

12.24.11   Ugh.  I can hardly muster a "Good Morning".

                 But knowing that it's You I'm greeting , I feel some measure of relief.  I know You understand my heartbreak----better than I do!   I am sore at all the stress----mostly emotional----that seems to go with this season.   "Contentment is my surboard"  indeed.   As I reflect on it, it seems that I need to know well the character of contentment, and also how discontent enters.  I need to recognize and rebuke the discontent.  A powerful tool lately has been to rehearse the fruit of the Spirit:  Love, joy, peace, patience, kindness, goodness, gentleness, faithfulness, and self-control.   They are my Christmas ornaments this year!   And to realize that "Think on  these things" is not just an option, it's a necessity.

          I think of Stu, and I see that in him I face a confusing outer layer of discontent.  That's what he keeps showing me, and trying to get me to wrestle on that level.  I think he must know peace on some level, though.  His eyes reflect it, and sometimes he shares thoughts and prayers that show it. 

          As I pray for him once again this morning, I ask for connection with You, Lord, recognition and the relief that it brings.  I pray for a deep humility to engulf him and win the war for his soul.  I pray for the wisdom and courage to let go of him as I love him-----not really humanly possible, but You are the one who invented miracles:-)  In You, all things are possible!

          There, I feel better-----Once again, You have breathed life into me!     Amen

Merry Christmas, my friends!  There is reason to rejoice!  

Joy

 I've been thinking about the paradox of Joy for a long time.

My first brush with it was in 9th grade----my catholic high school had hosted a two day on-campus retreat for the students.  As my friend Janet and I walked home on the second day, we found ourselves contemplating the difference between happiness and joy.  "Happiness is temporary" we concluded, "but Joy is eternal"  Don't know if we used the word eternal, but we had hit on something.  Sometimes a 12-year-old can be pretty profound.  (We also discussed racial prejudice that day, a huge issue at the time, even though neither one of us knew a single black person in tame Ventura, California:-)  Still, we were on the right track.  "You know", Janet ruminated, "I think there are good black people and bad ones,  just like with white people.  You can't decide about someone based on their skin color".  Seriously, we were really on the way to solving the world's problems.  Unfortunately, puberty got in the way...........! 

Fast forward to the year 2000.  That's when this image of a Christmas tree, topped with Joy but woven through with the words of James 1:2-4, popped into my head.  Considering the events of the past year, it seems to me to be a very appropriate image for my Christmas greeting to you all!  Wish I could afford to send each and every one of you a handmade card, as I did that first year-----but the photo has some patches of light in it that don't appear on the original, and they make me think of Christmas lights.

Joy is a surprising (to us) byproduct of  suffering.   "For the joy set before him" it says of Jesus in Hebrews 12 as it describes his death.  C.S. Lewis titled his autobiography "Surprised by Joy" (put it on your reading list if you haven't already read it!)   And as I walk through my own little trial here, I can testify personally that I have never seen God's face so often and clearly----and that is a lasting joy, his greatest gift to me.  I guess that's what I want to end with, in this season of gift giving.  We have been given an incomparable gift already, by the Definer of all giving!  Praying that you all experience the joy!

Merry Christmas, Friends

from Sue and Stu