The Breath of Life

I remember as a foolish 11 or 12 year with a trampoline in my back yard getting a crazy idea.  I think I came up with this idea with my good friend Jared, or was it my cousin Sam - either way I'm going to blame the idea on their influence :)   I think we decided it would impress the girls (and since I was way too scared of them to even remember my name in their presence it might have been my only chance).  The idea was this,  we would prove our manhood by jumping as high as we could on the trampoline and then jumping off.  ...Ok, we'd been dong this for a while already. We were pretty good at cushioning our landing by bending our knees or even doing a forward roll.  The grass was nice and soft too - it was a great idea.  We were going to do it different this time though,  this time when we jumped off we'd land flat on our stomachs on the ground.  It was my turn first, and as I remember it, my first REALLY memorable physics lesson.  That Newton guy was really onto something!  There were also anatomy lessons. That day I learned (among other things) that ribs and knees operate COMPLETELY differently to cushion a landing.  I also learned, on my second try (man, that's even embarrassing to write), that without breath, few other things matter.  I think the first time off  must have absorbed more shock in my forearms - but that second time sure packed a wallop!  Its the only time I can remember having the breath knocked out of me, and I was positive that I was dying.  No mater how hard tried I just couldn't take a breath.  My lungs were like old balloons - too stuck to themselves to inflate.  I was terrified, and I still remember the feeling like it was yesterday.
Then there was today.  Deana called with the news around 11 am - after 29 long days in the pediatric intensive care unit (picu), Christi was being moved to the floor! That meant not as much monitoring was needed because she was getting better!  Progress! A step toward home!!  They might even be on their way home as early as Thursday!  What great news!!!
Then around 4 pm - Christi stopped breathing.  Deana had stepped away for 10 -15 minutes to change her laundry and was on her way back as she heard Christi's room # being read over the intercom with a color code, and saw doctors running down the hall to her.  They were able to start her breathing again, and with that Christi was moved right back into her room in the picu.  Cat scans, reattached monitor wires, and one more anoxic episode later the search begins anew.
Now I've been hit harder - and the worst part is that it isn't me that can't breathe. Oh how I wish that it were!  I'm trying hard to be there for my students and my other wonderful children here and now, and we've had a great time - really.  I ache for my baby girl though.  Maybe I lost my wind this time too.
The spirit of man is described as "the breath of life" in the creation account.  Could she be leaving?  They were never able to determine the cause of her cardiac arrest last year around this time - could it be the same thing causing this now?  Was she trying to go then? When I had learned CPR just a few years ago, I had never imagined how helpless it would feel to perform.
I feel helpless now too.  Yet I trust Him.
He has filled me with His peace in my desperation - He has run to my aid.  I have no idea what comes next, but it's okay because it's in His hands.  He has come to me in the kind words and gestures of friends and ward members. He has lifted me on the wings of their solicitude. He has also personally breathed life back into me on this crushing day, and I stand only with borrowed strength.  It makes sense to Paul and to me - and I'm sure to many others, "when I am weak, then I am strong."  His grace is real, and it is - for today - sufficient.          

The Bottom-most Turtle

Legend has it that a well-known scientist once gave a public lecture on astronomy. He described how the earth orbits around the sun and how the sun, in turn, orbits around the center of a vast collection of stars called our galaxy. At the end of the lecture, a little old lady at the back of the room got up and said: "What you have told us is rubbish. The world is really a flat plate supported on the back of a giant tortoise." The scientist gave a superior smile before replying, "What is the tortoise standing on?" "You're very clever, young man, very clever," said the old lady. "But it's turtles all the way down!" 
Trying to find out what exactly is wrong with Christi this time around has been a bit of a stack of turtles medically speaking.  We brought her to the hospital in severe and nearly constant abdominal pain.  It had been progressively getting worse for a while and after a few sleepless nights, we were at a tipping point.  She had also had bloody discharge from her tube and, most recently, begun vomiting blood.  After a few test we were flown to Phoenix where we have been in PCH since.
After a brief scare with a suspicion of sepsis, We have sought diligently to source her abdominal pain.  In the mean time, she has developed two blood clots in her right leg.  They are non-occlusive (the blood has other ways around) but still not the best news.  Her face has also swollen significantly and there is a potential blockage in the valve where the small intestine and large intestine join - which is possibly caused by the tubing from her shunt wrapping around it. While none of these things have been sourced or solved yet, there seem to be additional layers added too often - more turtles.
Our own personal turtles are part of the pile here too.  Our house is slated to go on the market this coming week, and we are also supposed to fly to Utah on a house hunting trip on Tuesday.  Christi is currently on a ventilator and won't be making the trip (she was going to come) but that means that we will likely have to divide and conquer to get it all done.  Not to mention our other 4 kids who have been so kindly and carefully cared for by family and friends in Snowflake while all this is going on.  What stories this will make some day :)
The truth is really that there are, of course, no turtles that we are standing on here.  There are no causal loops, or even any unsure footing at all.  There are so many with so much more to wrestle with, with so much less support, with much more difficult circumstances.  We meet them nearly every second step here in the hospital.  The Lord said to the often troubled Israelites, "When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the Lord thy God, the Holy one of Israel, thy Saviour"
He paid an enormous personal price to offer us the sure footing He has. It has made a tremendous difference for us to rest safely in His hands in the midst of this turmoil.
Who can stand for very long on a stack of turtles anyway?

     

Tight

We try to be good, attentive, and competent parents to our sweet little angel.  We talk about, think about, and fast and pray about what to do for her a lot.  We have tried dozens of things with different outcomes - mostly unsuccessful though.
For the last month or two Christi has been in more and more pain.  Lately she had also been vomiting nearly every time she was fed.  This has been no small source of anxiety.  Deana has made trip after trip to Phoenix to try to determine what was going on.  We have been to the emergency room locally with not much help either - its not their fault they just don't have the pediatric specialists available to meet Christi's needs. So after much discussion and prayer we decided on Wednesday, the 25th of February, to pack up and drive her down to Phoenix to go through the ER.  It was the only way we could get the tests done that she needed without having to schedule them a month out.  We couldn't stand by and watch her suffer anymore.  We were desperate for answers.  So we drove 3 hours to Phoenix Children's Hospital, then waited 4 hours in line and in the waiting room to be seen. Half a dozen tests later we still had no answers.  Then the right person got involved.
This wonderful doctor, and immigrant from Poland, came in to visit Christi.  It took her 10 minutes of visiting with me and Christi to determine what was going on!  After months of searching there was finally and end in sight, a period to end this sentence. We were finally getting answers!
Come to find out, Christi had been having distonic spasms - a hundred or more every day.  She would cry out in pain, arch her back and neck (her neck was the worst) and stiffen her legs.  These were all involuntary, like muscle cramps, they were very painful and were a result of her brain injury from this summer.  It still breaks my heart to think of the pain that she had been in day in and day out.
The solution involved medication, but this angel of a doctor also taught me some behavioral interventions. She said that in Poland there are a number of people walking around with  undiagnosed distonia.  In order to keep it in check they walk around with their arms folded in front of them.  This keeps them from stiffening up, she said.  If you fold Chirsti' arms it may help her break through the pain.  Hmm.  I remarked that I had noticed that stretching Christi's neck forward had given her some relief as well as crossing her legs. "Exactly," she said.  Those are the other two things that a person can do to stop the spasm and break up the tension in the muscles - bow the head and bend the legs.  Not only was this great and welcome news to me, but also to my wife.  Then the question came to me that the Lord had been answering all along, "Why do we pray that way?"
Its a good question, and I had been perhaps to light with my answers to it in the past.  I have told my children things like it keeps them from poking each other and helps them focus - both of which are true answers, but not complete ones.  For Chirsti that position allows her to release the tension that causes her pain.  It is her letting go, and it helps her let go.  And there is the lesson for me.  As we have struggled, as all of us struggle to make our way through difficult things - to quote a hymn, "there is an hour of peace and rest," and it comes when I find my knees fold my arms and bow my head before my God and let go of my tensions, stresses, and worries.  It has been my experience that He will take them up - every time. No wonder he pleads with us in the scriptures over and over to "Ask," "seek," and "counsel" with Him. "And since He bids me seek His face, believe His words and trust His grace, I'll cast on Him my every care and wait for thee  sweet hour of prayer." Alma had it right, all things do bear witness of Him.  What a perfect and powerful gift prayer is.

"Bangarang!" The conquest of the Hook.

I found myself thinking the other day, "Wouldn't it be great if a few more of our current scenarios with Christi had periods on the end of them instead of question marks?"
There are so many questions! "When will she be able to walk/talk/sit-up again?" "Can she see me?" "Will she be able to do any of those things eventually?" "Will we ever know what caused her to stop breathing?" "Is (whatever it was) still a lurking danger?" "When she cries, wretches, or moans where is it she hurts and what should we do to relieve her pain?" "And what of my other 4 children whose lives have been necessarily altered as well?"   And on and on... It made me wonder if these type of questions are going to be around for quite a while or if there is some other punctuation to expect in the near future.  What's the difference between a question mark and a period anyway?
Then I had an apostrophe.  Lightning had just struck my brain.  The difference is a hook. 
Just a regular hook, like the one Peter Pan's enemy wore instead of a hand. Hand, hand, hand...  Isn't that what they called the other crew members on the ship in those days?  The ones that did all the work - You know, "All hands on deck!"?!  James Hook had a hook for a hand. He was literally holding a constant question mark.  Not only did it consume him - it was in his name, in his most defining memory, and his life's quest was avenging it - but it replaced his hand, a long time symbol for both action and camaraderie. Ironically, or maybe not, he lacks in both categories.  Is there a message buried in this story that I hadn't recognized before?? Constant questions can be paralyzing, and they can also strain relationships. I've always been a big Robin Williams fan, and his role in the movie "Hook" was one of my very favorites.  His recent and tragic passing has surely reignited some old memories - but this was even more!
Captain James Hook was very skilled at his vengeful craft. In fact, the only thing that separated his abilities from that of his younger nemesis was... the ability to fly.  Peter could fly, and so he escaped death at the hands of his angry foe again and again. What was it then that gave Peter this decided advantage?  Well, it was two fold: first, a person must be sprinkled by fairy dust, and then it must be activated by happy thoughts in order for them to take flight.  Interesting things these little fairies.  They are pretty fragile creatures.  Their very lives are dependent upon belief, upon faith.  They could then be seen as the incarnation of faith in a way.
What of happy thoughts though?  When Peter Banning finally finds the thought that allows him to take flight in that epic film, it is of family.  His children are the captives of the Hook at the time, but his happy thought becomes a powerful hope for their reunification.
So with a sprinkling of faith and a lively hope, Peter is carried on unseen wings to victory over the living question mark that would rob him of that which he values most - his family.
And now its my turn. We have been given great promises to trust in.  Each one ends in a period.  His grace has been sufficient for the challenges of each and every day.  And so it is, second star to the right, and straight on til morning.  "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary, and shall walk, and not faint." (Isaiah 40:31)
And so we'll fly and fly and neverland :)  

Telephone Poles

Every therapist that Christi is working with, and nearly every nurse that sees her mentions how far she has come.  "She is looking so good!" or "She is so much better!" are common responses.  She has come quite a long ways by nearly every estimation here.  I had a good chat with Christi's physical therapist, Nushka, today.  Nushka is a fantastic therapist, very perceptive, inventive, and driven.  We couldn't be more pleased with the care she gives Christi.  We talked today about how going forward it may not look like she is making much, if any, progress to people - maybe even to us if we are not careful.
The discussion started with a question about what kind of chairs, etc. would keep Christi in good positions.  Her point was that while there are many 'good positions,' the whole point is movement not status.  That struck a chord.
The truth is that Christi woke up from a coma over a month ago and still cannot walk a single step on her own, she can't roll over, sit up, say a single word, clap her hands, swallow reliably on command, etc., etc..  She could do all of those things with ease on May 12th.  As we are just about ready to be discharged and come home, I'm reminded that that is not the Christi anyone remembers.  The joke was, Christi spoke in church every week - but was never really formally asked to.  So we'll be focusing on "telephone poles."
As a runner who often leaves the house not knowing exactly how far or how hard I plan to run, telephone poles and other natural markers have become important to me.  They mark short sections of a course by which I can measure my progress.  They are better for me than mile markers or than thinking of the run as a whole, because I know I can push harder or hold better form - one telephone pole at a time.  I know it probably shouldn't work, but I have often told myself "just go hard to this next pole," felt relief and encouragement because it was so close - even though I knew with relative certainty that when I reached that pole I would just be setting a goal for the next one.  
Christi's progress has always been slower in physical things.  She was on a feeding tube until after her first birthday, she didn't crawl until around her 4th birthday, or walk till 5.  She has always continued progressing though.  Because she has, she has steadily outpaced all of the expectations that her doctors had for her. We have had many celebrations of "telephone poles" that would have otherwise been just routinely passed because of her.  So here are some of the the Christi's latest:
She can hold her head up nearly continuously for around 20 minutes.  She can successfully swallow a spoonful of applesauce in about 30 seconds to a minute.  She is able to tolerate a standing position and hold her own weight (supported) for over an hour, and she can tolerate over 3 hours of therapy in a row.
I am so proud of her!  I am also inspired by her.
I am grateful for the telephone poles that the Lord has placed along my path too.  As an adult, it has seems so easy to plateau.  The race is so long, and much of the scenery quite similar.   When I compare myself to the person I really should be - the person the Lord suffered and died for me to be able to become - I am a long way off.  So far off that it's discouraging to consider.  But what about just today?
Maybe I can be the loving and understanding husband my wife really deserves today.  That would be enough for now from here.  Then maybe over weeks, months, years and decades I can develop habits of doing those things and focus on other aspects of my life.
For me, daily goals are like telephone poles. Some of the most important growth the Lord has given me "line upon line" has come day by day by day.  Maybe those lines on the calendar separating the days are some of the "lines" He is referring to.  To be clear - He also says "grace to grace."  It is only with His help that any of us grow, and as the pioneers knew "grace shall be as your day."  I think that means that the Lord will strengthen us to meet the demands of the day and grow appropriately through them.  That's my testimony too.  I'm so glad He sent me a teacher and inspiration like Christi!

 

Roll with it

This last week has been quite a roller coaster.  Wednesday the doctors and therapists all came in excited that they had good evidence of progress. They were united on the request they were sending to the insurance company: 3-4 more weeks in inpatient rehab!  With such evidence, how could they say no?  On Thursday they did.

As the initial disappointment began to wear off, I remembered praying the previous evening for a solution for the separation of our family and its effects on our other boys.  One thing I have learned for certain over the course of the last few months is the value of both parents parenting side by side.  I know there are those that do it very well other ways, and I'm sure the Lord is able to raise them to the demands of their individual situations - but me and my queen are best together, there's no doubt about it.  Could this be an answer to prayer?

Our initial decisions about inpatient rehab were made with the intent of getting Christi the most help possible, recovering as much of her functioning as possible, before heading back home.  At home, outpatient rehab will require 4 1/2 - 5 hours a day (including travel), 3 days a week in a setting much less tailored to her needs.  Juggling those realities makes the transition home seem daunting.  How will we be able to find those extra hours?  How will our other kids' needs be met?  Then Christi started having more trouble with her feeds, she started throwing up more.  

Foot IV went bad so we got to get up in the stander again

Once or twice a day she would just loose it all over her bed.  She would moan, cough and sputter...then smile, giggle, and laugh -- all in the same few minutes.  I don't think I have ever seen a more inspiring example of dealing with adversity cheerfully - especially not from someone so young.  Other times she will break out in rolls of laughter in the midst of an absolutely quiet room.  Is she playing with angels I just can't see? I'm reassured constantly of the help that a loving Heavenly Father is giving His sweet little girl here!

Cheerful through it all

Well, the doctors and therapists went to bat to keep Christi here longer.  They wrote more notes about therapy sessions detailing each bit of progress.  They got on the phone with the insurance company's medical director and appealed the decision.  At last word, Christi has until Wednesday July 9th.  There is a chance she could be renewed again at that point, but more than likely it means we are coming home.  

Christi holding her vibrating spoon in her mouth (with help) while up in her stander.

So here's what I know:  God heals people.  He does so with and through others often, and always at His own pace.  Seeking His will and patiently pursuing His purposes in His time brings peace.  He IS mighty to save. 

God's way is the best possible way.  Because of His infinite foreknowledge and His endless love for His children, there is not a single thing that He asks or requires of them that could be any better for them in any way.  That is a big deal. It inspires total trust.

Family is central to God's plan for His children.  It seems to be at the heart of everything that He teaches and requires of us.  It is the lens through which all other things seem most clear.  What an incredible school home is!

God speaks.  He answers sincere prayers, and sometimes even prayers that have yet to be offered.  He expects parents to lead in the home and to consider carefully the welfare of their children.  This has weighed on me more than perhaps ever before during this time.  Revelation to parents is real and constant.  I don't think most parents even recognize the vast majority of it.  I suspect each parent will have an Oliver Cowdery like moment of realization when the Lord says, "without my guidance you never would have come to where you are."  He was their parent first (pre-mortally), and just because I have come on the scene to help out doesn't mean that He is punching out.  Parenting is a partnership not only husband and wife, but with God.

So this next week will certainly be an exciting one.

Oh, Christi started to roll over a little this week too.  It's just starting to emerge, but it is definite progress. Who knows, maybe I can learn to "roll with it" a little better too.  I'll learn from my smiling sweetheart :)

Descent to Ascend

"He that ascended up on high, as also he descended below all things...that he might be in all and through all things"  (D&C 88:6)
When Nephi asks to know about the tree his father saw in a vision, he is asked if he knows the condescension of God.  He responds that he doesn't, and then he is shown the Savior's birth, parts of His life, and His death at the hands of evil men.
When the Savior chose to come down to this earth as a humble child in a manger, he was taking a great step down.  The God of the old testament willingly subjected himself to mortality so that He might triumph over all its ailments for each one that would ever experience them.  He descended below so that He might rise above.
On this coming Monday morning Christi will be going in for another surgery.  She will be getting a G-tube. This will allow her to be fed directly to her stomach - bypassing the mouth and throat - through a tube into her tummy.
Strangely, we felt good about getting this procedure done -- even though we had fought against it long before (when Chrsti was on a non-surgical NG tube for the first year of her life).  It is a reversible thing, but then it had kind of seemed like capitulation, a kind of giving up on oral feeds.  Christ was eventually able to move successfully to oral feeds from the NG-tube then.  Yet in this situation, it feels like her descent into "G-tubeness" will actually allow her to ascend more quickly and effectively into oral feeds again.
Jesus descended there too for her, so that He would be able to succor her.  Like is often that case in this life with my own trials - there are earthly examples, or forerunners, that help mark the path and give comfort along the way also.
Ironically, Christi's little friend, Journee Harris, got a G-tube just a day or two ago.
I am so grateful the way is so clearly marked!  He really has "finished [His] preparations unto the children of men" (D&C 19:19)