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August Newsletter-Guillain Barre Syndrome-2

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Well, I set out to keep from writing about the subject of last month’s newsletter, but guess I’ll yield to the temptation to comment further on the recent medical emergency that Jane has gone through.  As most know, she became ill with Guillain Barre on March 21st.  It’s a very serious condition characterized by paralysis and the systematic failure of every life system that you can think of.  It is a condition that offers an opportunity for rehabilitation to Jane’s pre-sickness ‘normal’ life.  She and I both don’t want this conversation about our experience to be Jane or Ken centered.  But if we can place Christ as the bull’s-eye of the discussion, perhaps one more letter will not be too over the top. I promise to stop after this one.

Let me begin with something that was such a big part of our experience and continues to drive us during this recovery.  It’s always the subject in moments like this: praying.  I can tell you that we prayed, prayed in Faith, prayed until our hearts and our voices ran out of more expressions.  Hundreds prayed actually and offered their heart-felt hope for recovery. We heard from hundreds of our listeners and friends as a chorus of prayer was joined together with one voice.  I will tell you, Jane nor I, neither of us, will say we ‘cried out’.  There was no sense of desperation.  There was, instead, a sense of knowing in Whom we believed, Whom we trusted.  We both know that Jane is God’s possession; His to hold, her Father and Holy Parent.  Traditional prayer expressions were replaced by ‘pouring out of our hearts Praise and thanksgiving toward God’.

[The moment we reason about prayer we make it artificial.  But true prayer is spontaneous.  Our business in natural life is to breathe and not to think about it.  Our business in spiritual life is to breathe (to pray) and not to think about it.  The moment we begin to think about our prayer we are occupied with the means and lose the end… E. W. Bullinger]

For some reason I do not completely understand, Jane was in so much pain she always wanted the hospital room as cold as the air conditioner could possibly supply. The nurses worked with blankets around their shoulders.  To have just a memory of what warm felt like, in the early morning I would occasionally go down the hall to a small sitting room where in the very north corner was a solitary window that let in just a two foot stream of sunlight.  There I communicated to God quite often.  I set a record for using the words ‘Thank You’.  I could find no better words for the expression of my heart.  Not a thank you for the circumstance we found ourselves in, but a Thank You for His being there, for His presence in our circumstances.  Not everything we hoped for turned out like we wished, some did. From the experience, Jane and I can’t take any great credit for having discovered some wonderful doctrine of prayer. We simply give Him credit for being His adopted, for His being a parent to us in this terrible environment.  Everything that could be said in prayer probably was said.  I doubt that we, or all the people praying for Jane, were at a loss of words or passion.  While not all went as hoped, much did happen that rescued the hour.  I mean that just as it’s stated.  Each hour was turning on a dime.  Jane would go from stable to unstable many times a day.  We could not describe any 24 hour period with one description because each hour had its own moments of dominating the scene.

I guess I can reveal this, although I have not even shared it with Jane at this point.  Jane quit breathing two times during those early days.  The first time was at 7am one April morning. A little miracle thing happened.  Jane’s doctor, who had performed the tracheotomy on her a few days earlier, was standing at the door to Jane’s room.  That story is too long to do in this letter, but what did happen and what could have happened in that moment was very much in contrast.  Later, in the RML specialty hospital, Jane’s second recovery location, she had to be ‘bagged’ as she quit breathing again.  This time her nurse, her physical therapist, speech therapist and I were standing there, a ‘team’ to protect the moment if you will.  Many of those ‘little’ miracles were mixed with terror.  I’ll have to let Jane tell you about the music in her life during these days.  As Charlie Peacock sang years ago, ‘you can only possess what you experience’, so it’s her story to share.  We had great nurses that cared for Jane, but caring and ministering are two different actions.  In our daily life both were present each day.  Some from nurses, PTA’s, friends and family.

Early one morning in that stream of sunlight, I was comforted by the words found in scripture about not living by sight.  Obviously, what I was seeing was real, too real, too terrible to deny.   By watching Jane’s determination- her Hope, her Trust- I became more confident in our Faith no matter what I could see, what I was told, what I knew to be obvious.  I did not live by that picture I was seeing right in front of me, not by our new ‘normal’, not the sight of what I could see but the knowledge of what I knew to be true about HIM. The days were a bit like bull-riding. We were simply holding on during a very uncomfortable, dangerous moment.  There was a sense that there was a time coming when the ‘8 seconds’ would be over and we had made it through. Today, we’re still waiting on that 8 second buzzer but we are closer to that than ever, we just can’t tell how close we are.  Calendars and watches no longer play a role in where we are; the necessity of the Love of God is the only measure we have to manage each day.

(During this process, we did discover that some of the things we’ve always taken for granted were more important than we had imagined.  A get-well card actually does have great meaning in times like these; they really did deliver comfort through the mail.  A phone call doesn’t always interrupt, but encourages.  I experienced that being stopped by someone at Menard’s simply saying the words ‘we’re praying for you’ produced amazing heart-felt peace.  More than ever before, we know that family, friends and acquaintances, things we sometimes take for granted, are gifts from God.  That the Joy set before us in Christ Jesus is not only just knowing that there is a God but knowing Who God is.)

Much of the time the creature (us) thinks life is where God is not, that things we get at Walmart, at the car dealership, in the tanning booth, or at the local pub are life. But those and a thousand other things we substitute have nothing to do with Life.  All those other things distract and separate us from so much of what is available through our Faith.  We’ve learned that His Life is always present regardless of our circumstances.  Jane did not shed a tear for 8 weeks.  It was raw Faith that maintained her Life.  It was the only thing she needed. She required no other thing.  I did not understand that at first.  I lay many nights and early mornings watching what was going on in the bed just a few feet away from my bed/chair, swallowing tears as they ran down my face.  They were not tears of misery but tears that simply recognized the slipping away of Jane’s ‘normal’.  It took only 5 days to go from active to paralysis.

Now, eating, swallowing, talking, and some movement have returned.  As we get closer to returning to our ‘normal’, closer to family and friends, to concerts, to conversations with listeners, closer to walking, eating (without one of these crazy crooked padded forks), nearer to our old ‘life’ Jane cries a bit, longing for her old ‘normal’.  I think it’s because she’s so close to home but not quite there yet.  That small distance seems longer than the long road of those darkest days.  Those March, April and May days of terror were sustained by a strong Faith, a resolve that rested in a statement she made to me on the way to paralysis: ‘heaven is on earth’.  I’m still working on that one.  As she entered paralysis (lost all control of every movement and each function supplied by her spinal nervous system) Jane saw how much God grants Grace and Peace here, now, in our daily lives. During those terrible times I also saw the Glorious that held us both together, a strength that’s not explainable in any other way than to identify it as Faith.  I’m sure she would tell you to see and experience a little of that heaven on earth, take advantage of it, before rather than after these kind of events make that little ‘heaven’ so obvious.

Jane’s health status as of 07/19. SHE IS HOME!!!

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Many of you have asked for updates on Ken’s wife, Jane, as she has dealt with this illness that she has been facing. She has had a serious, yet treatable illness called Guillain–Barré syndrome.  She is HOME!  She is doing better than expected with her rehabilitation process. She has begun to take her first steps. (She walked, with a walker, for 21 feet yesterday.)  She has tremendous upper body strength. To go from COMPLETELY paralyzed from the neck down, unable to blink her right eye, to being able to take a few steps, is truly amazing. Many people have asked “how long until…” Here is what I will say to that. We will know how long when we look back after it is all over and see how long it took. We now know it was 6 weeks until she was off of the ventilator…8 weeks to hear her voice…10 weeks in Chicago…and 6 weeks in acute rehab.  To be honest, she doesn’t remember much of her Chicago hospital stay. She has been reading all of the cards in the past few weeks and has been so encouraged. All of the well wishes, cards, encouragement and prayers have been so appreciated by Ken & Jane.  THANK YOU, BVNers!

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