"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)  

Parents AND Firefighters

Today is Father's day, our 12th wedding anniversary, and the 33rd day of our hospital stay here at PCH.  I am beginning to worry more about my other children.  While Christi seems to be getting better and better day by day, some things with her siblings seem to be headed the other direction.
Sometimes children misbehave simply because it gets them the attention they crave and seem to be able to reliably get in no other way.  Sometimes adults do too, for that matter.  Sometimes lack of structure, or even the stress they perceive in their parents or siblings can cause little ones to panic.  Its understandable too -- these are the people they look to and lean heavily on for structure and balance in their world.  Friends and family have been so very kind in all of this.  Homes have been opened, vacations have been changed, schedules have been rearranged, and lives disrupted on our account all out of love!  It has been so humbling to witness the goodness of people's hearts!!
On the other hand, it seems almost natural for adults (but can be so damaging too) to send the message (even by just the way we act) that children *would* be worth our time (effort, affection, focus) if only something in their life was on fire.  What better reason is there to become an arsonist of one's own life than that?!  
So here I sit in a hospital room holding a figurative firehose and missing my other kids like crazy!  I am and have been fully invested in Christi's care.  I do feeds, therapies, and hygiene.  I follow regiments and schedules, and try to provide the best balance between work, rest, and visits that I can for her.  She needs all of it right now.  Yet I see my other four only every other day for a few hours at a time and Deana has been carrying an immense burden.  It was the role she chose in the beginning, but certainly not an easy one.
Today, she got them up early, got them ready, and tossed them in the car so that we could attend church together as a family for the first time in over a month.  We attended the Country Club Ward here close to the hospital - It was great!  At the end of the block, I got three different paper sacks full of popcorn with a little paper neckties on them and poems entitled "My Silly Poem About Dad." They were to fill in blanks indicating their responses to what their dad can or can't do on the poems and give them for Father's day.  Apparently, I can: "jump over lava," "run," "teach seminary," and "be lots of fun,"... but cannot: "belly flop in a pool without getting hurt," "breathe under water," or "be 2nd place."  Haha!  I guess I'll have to work on my belly flops :) I couldn't help but notice, though, that none of it had to do with anything that I have given much focus to in the last month.  Fires need attention, no question, but so do bellyflops and being lots of fun - that's what dad's are supposed to do with their kids in the summertime, right?!
I feel one of the real applications of the grace of God to our circumstance has been the way family relationships have been protected and preserved.  Myself, my wife, and my children have definitely been strengthened and upheld by the loving hand of God through the prayers and sacrifices of so many wonderful people!  We feel such a debt of gratitude to God and His earthly angels during this time!
Alma's people were blessed in difficulty in three different ways by the Lord though:  1) They we directed out of trouble and difficulty by the Lord in evading the searches of King Noah, 2) They were strengthened under the burdens imposed by king Amulon, and 3) They were delivered directly and dramatically out of the hands of their captors while they slept.  Had they stubbornly looked for only one possible avenue for their relief, they may have missed much of the miracle of their own deliverance.
Is it time for an inspired change of course? Or are there some little things that just need realigning?

Tastes Like Truth

"This edit is good doctrine. It tastes good. I can taste the principles of eternal life, and so can you. They are given to me by the revelations of Jesus Christ; and I know that when I tell you these words of eternal life as they are given to me, you taste them, and I know that you believe them."  - Joseph Smith (King Follett discourse)
I guess it is as fair a comparison as any.  Just like "hearing the still small voice" of the Spirit whisper truth to your soul isn't something done with your ears necessarily - the taste of truth is another powerful sensory metaphor.  
"You are what you eat," is another reason I like this quote. I guess it is true both physically and spiritually.
Jesus said, "Not that which goeth into the mouth defileth the man, but that which cometh out of the mouth, that defileth the man...those things which proceed out of the mouth come forth from the heart, and they defile the man." (Matthew 15:11, 18)    

In vain

Contemplating the commandment to pray always made me wonder if some of the current practices of taking the Lord's name in vain may have come from abuses of this command.  People could have been feigning prayer.  Seeking to be seen as pious, god-fearing people, they utter the name of the Lord in a form that would convey they are either asking him to curse someone or something, turning to him in awe or horror, or even expressing gratitude.  They are not though, and this is a serious enough offense that the Lord makes it one of the original ten commandments given to Moses.  Trying to look good, we do evil.

New room!

"And it shall come to pass that before they call, I will answer; and while they are yet speaking, I will hear." - Isaiah 65:24

Ever since the day they told us that what we were seeing with Christi was no longer the effect of the medications we have anxiously awaited rehab.  We have hoped, and fasted, and prayed since then that we would be able to recover all or any of the massive amounts of functioning she had lost.  I remember that day. That was the same day they told us that if she didn't improve fast enough they would have to do a tracheotomy to get her off the ventilator.  That is how urgent the doctors then felt she needed neural rehabilitation.
This is because she was (and still is) a long way from her old baseline.  She coos and moans and sometimes giggles a little now -- while she was reading 1st grade sight-words before.  We are still working for her to reliably be able to move her leg or foot on command now -- while she had just mastered pedaling her new bike with training wheels before.  The urgency of the doctors also become ours.
While she slept we had tried to prepare ourselves for what may emerge.  When we heard they were going to bring her up out of her coma, Deana and I discussed the possibilities.  This (significantly reduced functioning), wasn't the worst of the five possibilities - and we thank the Lord again and again for that.
Then (after the threat of a tracheotomy) our prayers, and the prayers of our friends and family were answered dramatically and specifically again - and she developed a significant enough cough and gag reflex for them to take her off the ventilator.  We expected them to whisk her away into rehabilitation as quickly as possible at that point.  Then we waited.
They moved us the next day from the intensive care unit down the hallway to a "less-intensive" care room. They told us that it would probably be Monday before we had our rehab consultation to see if we could be admitted to the inpatient rehab program (weekends are a bit slower pace here).
Though I consistently reminded my doctors and nurses, Monday and Tuesday came and went with no consult. Feeling a little neglected, I expressed my concern to a doctor, and on Wednesday, Dr. Brandys came for the consult.
She came and evaluated Christi and her readiness to participate in an aggressive 3-4 hour daily regiment of   physical/occupational/ and speech therapies.  Her notes after the evaluation would be instrumental in our acceptance to rehab or our discharge from the hospital.  If we weren't accepted that was the other option too - almost like they would be giving up on her ability to improve with such treatment.  We dreaded that possibility and hoped and prayed that Christi would perform as well as possible in order to get us in.
After Wednesday and Thursday's visits I was told that they would be making a decision on Monday.  I decided to fast and pray again on Sunday for this purpose.  Then it happened.
I later found out that it was primarily because they needed the room that we were in for someone else, but on Friday night at around midnight they moved us to the inpatient rehabilitation wing!  I think the nurse was a little worried about asking us to move in the middle of the night - she didn't anticipate me jumping for joy and pumping my fists the way I did!  We will start rehab on Monday!!
Then I thought, "I didn't even fast for this yet!" and the verse above from Isaiah came to mind.  Certainly it had been a part of my prayers over the last day or two, but I had anticipated a real push for her to be moved to rehab on the weekend. Could it be that God was so anxious to bless us this way, that when I made plans to do so He could wait to pour out His blessings?  The scriptures teach that, "When we obtain any blessing from God, it is by obedience to that law upon which it is predicated" (D&C 130:21)  He's got to be a just God, so He has to wait to bless me until I fulfill the law upon which the blessing is predicated.  But sometimes, like in this Isaiah scripture, He seems so anxious to bless that he pours out the blessing just as soon as He possibly can!
I've liked this Isaiah verse for some time now, because, in my mind, it describes God as so incredibly anxious to bless us that he can't even wait until we finish the request.  I felt it that day keenly.  As I read the scriptures that day and in the days since, they looked to me more and more like a loving Father's  excited directions on how to be blessed more and more by Him, i.e. - "Come here and look what I've got for you!!"
We have certainly felt an abundance of His blessings over the course of the last month!  Lately, I have also felt His absolute joy and pleasure in blessing us too.  That sounds strange and maybe even a little arrogant - but I mean it in the most honest of ways.  It has been absolutely overwhelming!
I really feel that He is so excited to bless all His children if they will only come.   Maybe that same excitement to bless has given Him cause to lament at times too - for the Jews and the fallen Nephites and Lamanites - with words like, "How oft would I have gathered you as a hen gathereth her chickens under her wings... and ye would not" (3 Nephi 10:5).  It all hangs on my willingness to come - to come and be blessed!  So here's to interrupted plans and prayers, a new room in rehab, and the overwhelming goodness of God!! :)

Sacred Ground

Christi had quite a day today - lots of activity, lots of therapists, lots of excitement. So much that she could hardly keep her eyes open for some of it.  She got a little afternoon nap, but not the amount of rest time she has been used to.  We persisted with the therapies etc. though thinking that she would sleep all the better tonight for it.  With that in mind, I started to get her bedded down early tonight. But, even though she had been stretched, lotioned, massaged, etc. she just wouldn't close her eyes and go to sleep!  Then it hit me, we hadn't said her prayers.
I know it might seem a little silly to try to have a little girl who can't speak again yet say prayers - but Christi loves to pray!  She loves to pray so much that she has sometimes drawn impatience from her brothers and sisters (especially on fast Sunday) if she is asked to say the prayer on our meal.  She always asks Heavenly Father to bless so many people and things that she prays for quite some time.  Oh, and she always asks a blessing on the food right before she closes (even at bedtime :)).
So like I had done before, I folded my arms beside her and prayed.  I broke the prayer into small phrases like I often do with her little brothers giving them time to repeat each little portion until they feel confident coming up with their own material.  I would pause between phrases and at each interval Christi on cue, would squeak out a little sound.  Then she would wait.  She would wait until I said the next phrase, and then again - another little sound.  This continued all the way through the prayer.
When I opened my eyes at the end of the prayer, I saw the most beautiful half-grin (she can only smile with half of her mouth right now) spread across her face as she focused on a point over the top of my head.  I felt right away like I was on sacred ground! I felt that real, genuine, heartfelt communication had taken place between a little girl who can only squeak - and her all powerful Father!  So grateful to be her student today!      

My Manna

It is easy not to appreciate, or even really see, things that are common.  I remember watching a youtube video a few months ago about the tactics of illusionists and magicians.  For the most part it had to do with the things you notice vs. the things you take for granted.  Subtle, or even dramatic changes could be made to something in the background while focus was intentionally drawn elsewhere.  In this way people could be convinced of things that were not real.

As the children of Israel were dramatically delivered out of Egypt by the hand of the Lord, each one of them had a living and personal witness of the power of God and His love for them. In grand culmination of their deliverance He opened the sea for them and led them through on dry ground.  When the Egyptians attempted to follow in pursuit they were swallowed up.  For centuries after this experience, their descendants would speak, and sing, and celebrate holidays in remembrance of this grand deliverance.  Then they found themselves in the desert. 

The Lord provided for their needs there too.  He made water flow out of the rock and blessed them with bread from heaven.  This bread was given daily (except on the sabbath) as a direct reminder of the Lord's daily care.  In this way, the children of Israel began each day with a miracle.Yet over time this miracle became more and more familiar until they even complained about it and desired the "flesh pots of Egypt."

In 3 Nephi chapter 2 The Nephites and Lamanites in the land experienced a similar thing in the wake of the sign of the Lord's birth.  Each one of them had fallen to the earth when the sign was given either in fear or gratitude and worship, and each had known.  As the many other signs and miracles surrounding His birth were given chapter 2 opens with this statement, "the people began to forget those signs and wonders which they had heard, and began to be less and less astonished at a sign or a wonder from heaven, insomuch that they began to be hard in their hearts, and blind in their minds, and began to disbelieve the all which they had heard and seen-- Imagining up some vain thing in their hearts, that it was wrought by men and by the power of the devil, to lead away and deceive the hearts of the people; and thus did Satan get possession of the hearts of the people again, insomuch that he did blind their eyes and lead them away to believe that the doctrine of Christ was a foolish and a vain thing."

As a witness of the day to day miracles of Christi's condition ad recovery here in the hospital, I feel humbled at the consistent way the Lord continues to bless her in miraculous ways.  I feel sometimes ashamed to ask for yet another miraculous improvement and step along the path after I have been given so many!  Yet he has put a vision of our own promised land before me, and He bids me seek it.

I think the Lord is, has been, and will be much more active in our lives than we often even realize. I am sure I have effectively gathered my daily bread from the ground many times not giving a single thought to its origin.

That line in the Lord's prayer where He prays, "give us this day our daily bread," is different for me after this experience though.  I am committed to continue such a plea, and to stand in recognition and gratitude for its wonderful and consistent answer.   

PCH pics (no specific order)

Persistence

My two oldest, Isaac and Emma, had track and field days in the last week of school that underscored something I already knew -  Everyone wants to be a talented sprinter.  It is quite an honor, at the primary and intermediate schools, to be among the top three in your class that gets to race that day.  You must place high enough in you preliminary class heats for boys and girls in order to do so, and when you go out to race, the hopes of your whole class rest upon you.  Bragging rights are at stake individually and as a class.  The 400 meter run on the other hand is open to all takers.  This is the longest event they run that day and anyone can enter. So Isaac did.
When the timer said "go" they all took off.  The boys in first and second place jetted out in front of everyone else.  Their lead grew steadily until about the 200 meter mark, and by then it looked like they may not even be catch-able anymore. Isaac hustled along a ways back in third.
Thanks to genetics, Isaac is not big, there were kids in his race that were easily a whole head taller than him.  He planned his race well though, he kept a consistent pace and by the end he was in place to challenge for the win while many others had long since faded.
For the last two weeks now Christi has been in the Phoenix Children's Hospital in a medically induced coma. She was put under to stop a massive seizure that she was having.  In order to get it stopped they had to put her under deep and keep her under a long time.  I remember watching her brain waves on the EEG monitor go from violent spikes to screens and screens of completely flat.  For the last couple days she has begun to wake up.  Her progress has been very slow, and even now she does not move her limbs or extremities on command or even very much at all.  The story and perhaps even our trajectory changed a little this morning when the doctor's did their rounds.  They reported that the levels of sedation medication in her blood were low enough now that they no longer were effecting her behavior. That means there is some other cause.  There are two possibilities that they asked us to consider - first, that what we are witnessing is the extent of her brain damage, or second, that this is still post seizure recovery.  Either one could be long term of even permanent.
While we had know these possibilities from the beginning, we had hoped I suppose for 2 maybe 3 intense weeks and then a gradual slide back into normal noisy, energetic Christi life.  2 to 3 weeks of buoying each other up, 2-3 weeks of tears mixed with seasons of rejoicing, 2-3 weeks of life at this level of intensity would be a good sprint for our faith.  Faith, for me at least, has always been easier in the short term though.  It takes more planning and consistency, more persistence to stay the course for the long haul.
The journey must still be taken a step at a time - manageable short term goals make a big difference - but this type of race isn't run with grit teeth.
Paul said, "Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight,...and let us run with patience the race that is set before us." Any distance runner will tell you that running with patience does not mean running slow.  What it means is pacing yourself - planning for the long haul.  In that way, distance running is more cerebral than sprinting I guess.  In elite races there is an ebb and flow of things.  They always give their all, but in very few cases does someone lead the race from wire to wire.  Every endurance runner must pick their spot and each one can expect to battle at some point with "the beast." This inner battle, and how it is fought, separates champions from the rest of the field.  Paul continues, "let us run with patience the race that is set before us, looking unto Jesus, the author and finisher of our faith."
Not knowing how long this race is would be unbearable under any different author.  He is the finisher though too.  Isaiah wrote, "Has thou not known? hast thou not heard, that the everlasting God, the Lord, the Creator of the the ends of the earth, fainteth not, neither is weary?...He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the Lord shall renew their strength, they shall mount up on wings as eagles, they shall run and not be weary, they shall walk and not faint"   -Isaiah 40:28-31
Christi faces the possibility of a tracheotomy if she does not develop a sufficient cough/gag reflex by the end of the week.  The thought of it is hard to bear. She continues to progress though, and today's cough was better and more frequent than yesterday.  Still weak, inconsistent, and not yet half what it should be, but getting better. There is no way that she or we could run this alone.

Time to Wake Up!

"And now, knowing the time, that it is now high time to awake out of sleep: for now is our salvation nearer than we believed." (Romans 13:11)

When I was young, my dad used to wake me up in the morning by coming downstairs to my room, wiggling my big toe, and telling me kindly that it was time to get up.  This was much better than a blaring alarm clock or anything else for me.  He probably doesn't know it, but many of those mornings I woke up as he came down the noisy staircase or even a few minutes earlier, but waited in bed with my eyes closed for him to come wiggle my toe.  I was quick to obey, and was usually one of the first ones upstairs at the table for breakfast.  I've been a morning person ever since.

Christi also rises quite early we have found :) Most of the time, when she wakes up (between 4:30 and 5:30 in the morning) she cries or yells out a little as she awakes.  Just a little usually, but enough to alert her parents and sometimes her siblings.  That's my cue. I'm the keeper of the morning routine around our house, and have found that the way Christi is first greeted makes a big difference for her.  If she is shushed or controlled she gets angry.  So for the last while the greeting of choice has been, "Hi Princess!! How did you sleep?" - spoken with as much enthusiasm as I can muster.  She always responds, "Good."

In the scriptures, awakening has to do with coming to see things as they really are.  President Packer taught, "True doctrine, understood, changes attitudes and behavior. The study of the doctrines of the gospel will improve behavior quicker than a study of behavior will improve behavior...That is why we stress so forcefully the study of the doctrines of the gospel."  In that sense, we all should have patterns of awakenings, big and small, as God teaches us true doctrine through scriptures, prophets, promptings, and life experiences.  The whole experience of this last week has been an awakening to me I guess also.  There are a number of sacred and personal things that I have learned.  As I have come to understand each of them more clearly and fully, I have felt each time a great desire and motivation to act on them.  The Lord is such a great teacher and motivator!  The way He awakens me to what I should know and do to become more like Him is sometimes a sharp change (like waking up can be), but His call is always filled with love and kindness.  Do I always "awake and arise" as I should when he 'wiggles my toe'?  Do I make the changes I need to make when I am shown them?  He promises us, "If men come unto me, I will show unto them their weakness." (Ether 12:27)  That may sound harsh if I forget his kindness and love for me. He loves me enough to teach me.  That is one of the reasons he asks us to study His gospel.  He continues, "...I give unto men weakness that they may be humble, and my grace is sufficient for all those that humble themselves before me, for if they humble themselves before me and have faith then will I make weak things become strong unto them."  That is the hopeful promise that those who "awake and arise."
          
A little over 2 hours ago a doctor, then a team of doctors, entered my Christi's room here at Phoenix Children's hospital.  They announced a dramatic change in plans for Christi's path toward waking from her coma.  Instead of taking from five days to a week, they are going to wean her off the drugs that are keeping her in a coma today! This means she could wake up as soon as tonight! I can hardly wait to hear her cry out and greet my princess again!  Mustering enthusiasm will not be a problem, containing it might be :)

There are a number of possibilities that we are preparing for as she awakes.  She may linger under the effects of her medication or her long sleep for a while; she may come back as lively as she has ever been; or she may exhibit a new baseline from any damage that has been sustained to her brain.  Whatever the case, we are excited for whatever this new morning brings.

I'll try to do my best now that the stairs have symbolically creaked, to close my eyes and hold still waiting with great anticipation for our toes to be wiggled.  With any possible changes or teachings that the future holds - it's going to be a great morning for us both!   Its almost time to wake up!!

The trial of my faith

I have always felt that what Moroni was referring to in Ether 12:6 about the trial of a person's faith was referring to difficult times.  He certainly was going through them!  He had seen his entire people destroyed and even his father killed by the enemies that now sought him.  He was in hiding, and yet the things that he records in hiding and on the run include a discourse of his father on faith, hope, and charity. While he certainly had hope for the future of the record he bore, what hope did he hold onto for himself in his own personal situation?
He testifies that if one holds on faithful through those difficult times, through the trial of ones faith - times when doubt may threaten, or when despair or fear seem to pursue - that they will be blessed with the "witness."  He wrote, "I would show unto the world that faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith."  Specifically, this was his own editorial comment on the Jaredites that would not believe the prophecies of Ether because they could not see them. He continues, with the example of the Nephites faith that brought them a visit from their Savior. He writes, "Wherefore, ye may also have hope, and be partakers of the gift, if ye will but have faith...for if there be no faith among the children of men God can do no miracle among them."  What is the witness?  And how then do we exercise faith?
The last one first. Joseph Smith taught that "faith is the principle of action in all intelligent beings." (Lectures on Faith:1)  Faith is a cause of action then. James taught, "Faith without works is dead being alone."  Elder Richard G. Scott taught, "Every time you act in faith, that is, act in worthiness on an impression, you will receive the confirming evidence of the Spirit." (GC Apr. 2003)
Moroni had difficulties, but he also had a responsibility - a direction that he had been given by God - to finish the record and hide it up unto the Lord.  He performed his responsibility marvelously and among the last words he wrote included the witness he has received that "I soon go to rest in the paradise of my God."
Perhaps exercising faith has more to do with how well we serve the Lord in the midst of our difficulties then how well we can grit our teeth and be stoic.  Certainly there are times when we must be still and know that He is God. There are also times (maybe more than not) that require us to believe and go forward doing the will of God with the attitude of Daniel's friends who after testifying of the power of God to deliver them from death, reply to the angry king, "But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up."  Their unrelenting firmness to act in in faith and worthiness on direction given from God eventually leads the king to exclaim (after the furnace) "there is no other God that can deliver after this sort." (Daniel 3:29).
A little over seven years ago I found a little piece of a wall in Phoenix Children's Hospital where people could attach messages of hope and inspiration on little slips of paper.  Feeling immense gratitude for the miracle that was the birth of my Christi I wrote those simple words from Daniel 3:29, "there is no other God that can deliver after this sort."  We had been delivered too.  Delivered from fear and doubt as often as they had come, and delivered from the expectations of the medical experts who had delivered woeful prognoses.
Time and time again over the last seven years we were delivered again and again, and to me it became maybe a little bit too common.  That is until this Tuesday.
So tonight, after so much good and positive news about Christi's improving situation, she had a setback. The sedative they were about to wean her off of, instead of cutting the dose, the doctors 5x'd it.  The seizures had returned.  So to suppress the electrical storm within the brain they were going to take her back down to the depths of her medically induced coma. No she hadn't awakened, but moving that direction had brought the seizures back.  The news was almost paralyzing.
But if to exercise faith is to act, then it can't be. There is STILL no other God that can deliver after this sort.  His plan is STILL perfect, and doing His will and accepting His plan is STILL the choice that will bring the most peace and happiness to anyone and everyone.  Maybe there is a double message in the phrase "Be 'still' and know that I am God."  I will be still, by seeking still, by serving still, still standing for truth, and still seeking to act on what He directs me to do.
The witness will come.    

Scrappers

With the help of some loyal friends, my wife and I have taken over the responsibilities of the youth wrestling club here. To our surprise and delight over 90 kids have signed up and are participating with us - nearly double what it has been in past years!  What a great group of kids too!  I genuinely love the sport like kids love cake :).  We are the Silver Creek Scrappers.
This week especially, in practice we have discussed what it means to be a scrapper. We have developed drills around and worked hard to develop this attribute in our wrestlers.  For what it is worth, here is my definition - A scrapper is someone who recognizes, seizes and takes full advantage of the opportunities they are given.  Scrappers work hard, are opportunistic, and filled with a positive hopeful attitude.  They anxiously await, even expect, each coming opportunity and know that hard work and hustle will help them take full advantage of it.    
I aspire not just to be a "scrappy" wrestler I guess, but a scrappy person overall.  We each have so many opportunities to do good.  Many more than we are ever able to handle.  Some of them feel different than others though.  They seem to bear heaven's recommendation.  Those are the ones that need to be seized immediately and magnified.  Each time that I have done so, I have found joy and fulfillment in increasing measure.  Each time I have hesitated or neglected to take such an opportunity I have missed out.  Just because it s right though, doesn't mean that it will be easy.  Like with our wrestling club - it will, more often than not, be a scrap.