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.