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 :)