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Yearly Archives: 2012

August Newsletter-Guillain Barre Syndrome-2

Posted on by Laura Posted in Newsletters | Leave a comment

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!!!

Posted on by Laura Posted in Uncategorized | 1 Comment

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!

July 2012-Guillain Barre Syndrome

Posted on by Laura Posted in Newsletters | Leave a comment

It’s 3:43 a.m. and I know I am to write to you.  What I mean by that is my heart has finally let me know it is ok to share a few thoughts with you. Most of my letters are expressions of what Jane and I have come to know of the Joy of the Gospel, the Wonder of the Love of God in our lives.  This letter will be a bit more of a personal statement about the current event in our lives, the onset of Guillain–Barré syndrome on March 21st.  While a personal statement, it’s also kind of a blunt statement, that reflects the situation of being very critically sick and maintaining Faith.

Let me start by saying that this experience is not about increasing our Faith or testing our resolve.  Our Faith is like a balloon, and going through this experience has not added air to that Trust.  Likewise, I must say that we do not feel that it has taught us a new, great Truth.  Actually, it has created much difficulty.  I say that without complaint.  Many people have gone through times such as these; we are not experiencing anything different from what millions of other families have experienced.  But it has, as with everyone that has faced such issues, challenged us on every front, not just physically but in every facet of our daily lives.  Jane and I both find no attribution to the hand of God in this, as I mentioned, no lesson to learn from this. We Trust in a God of Love, Peace and Grace.  Our Faith is in a God who does not visit this kind of terror on His children, but comforts them during terror.  He does not require us to solve a great mystery to find blessings, but reveals Himself eagerly and freely to us.  He looks for us, seeks to be with us, hopes for us, loves us, cheers us on. He has paid a terrible, horrid price through the death of Jesus to reconcile Himself to us.  Jesus’ sufferings did that for us freely, not to be confused with these sufferings that Jane is going through.

For us, this current ‘experience’ is due not to the Will of God, but more due to Adam.  This creation we all walk around in is not the Creation that the Love of God started out with.  It’s been stained by the independence of Adam and cursed by Adam’s deeds.  It’s a fallen creation of Genesis 3 not the original of Genesis 1.  It’s a world that takes from our lives rather than gives to our lives.  What Jane has been going through, rather than adding to our Faith, has tried to subtract from it.  We do not believe that it is from God; He tempts no one, He rebuilds and refreshes.  We trust He does not diminish and damage His children’s lives.  This experience is like the tide, it tries to erode and wash away the foundation of our Faith, tries to wear it away and diminish its rocky shore.  God’s role in our lives is to do what He has done all along in our lives: support and encourage.  The Kingdom of God acts as a structure for all our life experiences to hang on, it’s the framework of our strength.  It’s much like the frame that a house is built on.  We recently had a dishwasher leak and it leaked for days underneath the flooring in our house.  That flood, if you will, damaged the drywall, the subfloor, it ruined the pad, molded the insulation, but it did not damage the structural studs or sheathing.  We simply replaced and repaired the damage and used the strong original structure to put everything back together.  In Life, when a flood comes (in this case Guillain-Barré) it rises up against our house, doing much damage sometimes, and in this specific case that Jane and I are facing, much damage has taken place.  But, even in this, the structure of Faith, the joists, studs and rafters have held strong, and we have began to prepare for restoration.

For many weeks now I have watched Jane wrenched with pain and tears, unable to control that pain and defend her body, a body raped by pain.  Many times I’ve seen her pray, many times I’ve witnessed her mouthing ‘nothing is certain but Christ.’  Jane did not learn to trust under these circumstances, during the pain and suffering; she learned to do that over the 40 years of experiencing the Grace of God.  That knowledge came from earlier Faith, not a lesson during this terror.  Prepared Faith gets her through it.  A Faith exercised before the winds and storms of life threaten, a Faith built on a Rock and not sand, make everything tolerable. That knowledge provided the structure for her to withstand this flood of sickness.  For us there is no hand of God here!  If there are any of God’s fingerprints they can be found on her strength and confession.  After all the suffering, Christ still remains.

During this I’ve seen things I never wanted to see, things I hope to never see again.  I’ve witnessed things that are humiliating for her, things required by the critical nature of this syndrome, things that hurt.  I’ve been broken-hearted for the injustice of it all, the contrast between what she has said and lived for 40 years and what she now faces.  We’ve had everything stripped away and live down to the bare-bones existence, day in and day out in a hospital room with pulses, fevers, bed sores, breathing rates, loud machines, sleepless nights of pain, paralysis, helplessness of being given a bath more akin to a car wash, tubes- lots of tubes, bags, a breathing vent, needles, what must be hundreds of meds to treat each system as it failed with the advance of Guillain-Barré, time learning to breathe again, swallow again, walk again, write again, speak again. Jane and I have a constant Faith that has been imprinted on our hearts.  Guillain–Barré has not revealed anything new about God’s Love, it has challenged it, tried to destroy it, but it has failed.

No terror, no pain has been able to wash away the tattoo placed on our hearts about the Love of God.  God Loved us first, provided a way to adopt us into His Family, provided a Righteousness not of our own doing, a Holiness that is tied to His Holiness, before the foundation of the world determined to seek us out, make effort to capture us in His Great Love and preserve us by the Spirit of God.  He was a Friend of Abraham and He’s our Friend as well.  We are His possession.  This moment is about His Faith place in us, His testimony of Comfort toward us.  The God that we trust and believe is Love and rather than a God that is waiting to condemn or cast us off for any immediate opportunity, we have found a God that is eager to embrace, restore and heal.

There have been days when I thought about what it would be like to denounce all we believe and what it would be like to just ‘hang it up’.  I don’t feel like I need the Gospel because either I or Jane are weak and just need that ‘perpetual crutch’ to lean on. There is nothing about Faith that is necessary for either to be stable, to be secure.  Our Faith is chosen, loved, treasured not for any reason other than the work of the Spirit of God to gift it to us.  I have sat at the hospital awake at 3 a.m. many nights and have been dismayed at what I saw happening.  I have thought of how much our ‘normal’ is not normal any more.  The person I saw just a few feet from me I did not recognize any more, pain had changed her expression.  Sometimes what I saw was a very sick person praying, praising and ‘listening to the angels sing, listening to music that came from the right hand of God, music that (Jane’s words) could be turned off and on like WBVN’.  I saw a sickness that distorted the calendar and the clock.

Nothing that had been secure prior to March 21st is secure today- well, except One.  We have not been destroyed.  And while we will not say our Faith is stronger because of this, we can say our Faith has survived the flood of a very terrible sickness.  It is a Faith that can be as Paul said, the same Faith in little and in much.  The structure of Faith that under girded our hearts remains intact and we hang on to the only thing that is certain: Christ!