Day 411 - July 31 - Smarge Shrugs

Last night at about 11:30, Cherié and Connor and I had just about finished our nightly routine, and they had sent me upstairs to get ready for bed. I had dragged my old carcass up the stairs and had just started emptying my pockets onto the bedside table when a vast hue and cry went up from down below, with my name being hollered and cries of "Come here" in the offing. It's difficult to hear because of the whole-house fan running above my head, but I can hear that I need to go back downstairs.

Now - I'm tired. My feet hurt, I've just climbed the stairs, and I have to get up in six hours or so. I don't want to go back downstairs and then climb back up them again later. I don't really want to be awake anymore, but what can you do? So, Mr Grumpy Pants heads back down.

When I come around the corner, however, the mood isn't what I was expecting. I thought there was a crisis situation, but here the two of them are, smiling. Connor tells me "Watch my shoulder - check this out!" So, I watch his left shoulder, and he proceeds to shrug it about a quarter of an inch - over and over and over again.

Since his shoulder muscles occasionally spasm somewhat like that, I asked him "Are you doing that?" and he said "For the first time, I know that my shoulder's moving right when I tell it to"!

He was so very pleased with this! His spirit was really uplifted by being able to repeat the action. It's also significant that he has the sense of the shrug responding to his command. So we thank God for this progress.

You know, we need a word in the vocabulary that describes something that is small and large at the same time..."smarge", perhaps?

Anyway, please join us in thanking God for this smarge answer to prayer, and continue to lift the boy up. God is going to heal him!

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Day 409 - July 28 - A Full Day

Well, we all survived the doctor's visit. I guess we'd all sum it up as "not as bad as we thought it was going to be". We were with her for about an hour, discussing data needed to get CCS to take care of the second vent (yes, I too thought this had been resolved). We also reviewed and modified some of our vent-weaning protocols. The doctor calls Connor an anomaly - his charts say one thing but clinically he's another. For instance, a true C1 complete injury, which is how they classify the boy, would code immediately - they have no ability to breathe. Christopher Reeve was a true C1 complete. If you ever saw him, you will remember that he also couldn't lift his head. Connor holds his head upright all the time, and to demonstrate his breathing he went off the vent for six minutes while the doctor watched. She finally stopped him - he was ready to continue. So he doesn't really fit any of the classifications, which causes all the confusion between people who deal with him (like the doctor) and people who count beans and just see numbers on paper. They think he's one way because of what the records say, but he's not like that. So a lot of the effort goes to just straightening out misunderstandings.

After the doc's visit we did come back home, but Connor arranged for some friends to go to the movies during the afternoon. Cherie and I napped. Then in the evening, while some people we went to church with years ago (and who now live in Japan) were here praying with us, Connor and Josh announced their plans to go to another friend's house for dinner. We quickly seized on the opportunity for a short dinner date, and then (you guessed it) came back home and slept until the boys came home.

So, a full day for the boy, which he needed. Thank you for your continued prayers in that regard for him and for us!

E.

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Day 408 - July 28 - Doctor time

We're off to the doctor this morning - just a consultation, but Connor will get to endure the "doctor glare" for a while - yippee. Once that's over, I guess we'll come home and watch a movie or something.

It's overwhelming how much of life has been devestated by this injury. Connor simply grieves over things as seemingly easy as going to the beach with his friends - even if you could figure out a way to roll the chair over the sand, it would destroy his chair and ventilator, not to mention what would happen if it got into the vent and broke it. And so he doesn't go, but stays home instead.

On top of that, his involvement in activities with his friends is limited by the number of people who can help him while he's out. We're planning a sort of barbecue/training session for some of his friends who've expressed a desire to learn the basics of helping the boy, so hopefully there will soon be others who will be able to share some of the responsibility for helping him when he's out.

I think the fact that it's summer is driving home this sense of disconnectedness even more. You know that Connor has always been an outdoorsman - hunting, fishing, fourwheeling, and other activities like that were always his favorites. Last summer, of course, was taken from us - we didn't have one - and this summer is full of reminders that Connor isn't taking part in all the fun. Even things as seemingly innocuous as friends' Facebook updates - "Hey, we're at the lake" or "Spent the day waterskiing - boy am I tired" are brutal reminders that he's sitting at home in front of a computer. Winter is a bit different - everybody else is hunkering down inside as well - but summer is full of reminders that he's not taking part. We see it in the late hours of the night, when he comments to his Facebook friends or changes his status report - "I wish I was normal" was a recent one.

The kid puts such a strong face on it - everybody who sees him thinks "He's handling this so well" or "he's got such a great attitude", and he is and does. But he's also not putting his feelings on his sleeve for all to see. In that way he and I are different - I can put my inner emotions out for others to see, but Connor doesn't do that. But we see it around the edges, as it were, and he agonizes and grieves. And we can't make it better.

So my request for you is that you lift him up in prayer - not only for his healing, which we continue to trust God for - but that he would find purpose; that he would be given signs of hope in his body; that he would grow spiritually during this time; and that he would be able to remain connected, in person (not just electronically), with his friends.

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Day 407 - July 27 - Apology

I'm sorry - I've been working all morning on a post, but it's just all wrong and not worth posting. Please check back over the next day or so - I'll get something up. I'm just in a blue-funk-writer's-block sort of status, and can't get the right words to come out.

Thanks for bearing with me.

Eric

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Day 404 - July 24 - Frisco Report

The trip to San Francisco went very well, much better than we could have hoped. Connor and his buddies got to the door of the club after we dropped them off, and after announcing that they were on the guest list were given the complete royal VIP treatment - numerous club employees helping him into the club and to a reserved, roped off section of the floor right next to the stage. The employees were so extremely helpful and solicitous that Connor couldn't stop talking about it on the way home. So a big public "thank you" to the staff and management of Slim's on 11th Street in SF - we greatly appreciate your service to our son.

The concert was great, according to those family members qualified to judge such things, and Connor had a blast seeing his friends again. Cherié and I had dinner with a friend downtown, then dozed for a bit in the van before picking the boys back up and heading home at quarter to one.

All things having a price, I rolled into bed at 0217 AM, and back out to head for work at 0500. But while I got the shortest sleep of the family that night, Cherié and Connor didn't get to sleep until 0300, and had numerous interruptions all night as well. So even though they got to sleep longer in the morning than I did, we're all still trying to recover.

I guess that's part of the lethargy we're all feeling this week. We had to go to the hospital yesterday for Connor's trach change and some x-rays of his shoulders and chest, and that was a long and arduous process which we're glad to have behind us. We have to go to the doctor's on Tuesday for Connor's next visit with her, and I'm dreading it a bit - we haven't had as much success with the breathing practice as I had hoped, and I'm sure we'll get the look - that raised-eyebrow glare they toss out when they think you ought to be doing something different. Yippee - looking forward to it.

So that about sums up this week. Hopefully we'll have something better to report sometime soon.

Love y'all,

E.

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Day 401 - July 21 - Lungs

Well, we continue to swing in a hammock of prayer offered up by folks who love us. I started to say "rest in a hammock of prayer", but upon reading it I realized that I've never actually been able to do that - hammocks always feel so unstable that I haven't been able to attain that cartoon-ideal concept of sleeping the day away in a hammock - I'm always a little afraid I'm gonna fall right out! Which, ironically, is a much better word picture for this situation anyway!

I often wish that somehow we were so self-capable that we didn't need anyone to pray for us, but while that might sound ideal, it's actually an admission of my pride. My self-image gets a little out of shape when I'm forced to rely on other people, so these last 13 months have given me plenty of room for improvement!

Anyway, to get to the real point of this post, we (once again and continually) need your prayer for the boy. Over the last few weeks, his capability to stay oxygen-saturated has been slowly lowering. We used to see his O2 saturation in the high 90s all the time, but lately we've been having a hard time getting it over 95. The lower it goes, the worse Connor feels, and obviously too low is hecka bad.

It's not as if he's about to pass out all the time, but rather that because of the lower numbers we can see that this trend is forming for some unknown reason.

We know he has damaged lungs from his two bouts with pneumonia in Fresno. We also know that both he and Cherié have been having a bit of a reaction to the haboob of privet pollen that's been blowing through Morgan Hill lately. But whatever the reason, the result is that he's having some difficulty getting enough oxygen into his system. So I wanted to request that you be praying specifically for this, and lift him up that he might get the oxygen he needs.

Also, please be praying for us today as we venture to San Francisco this evening. Connor and Josh are going up to see a concert, and Cherié and I are going to take a few hours for dinner in the area while we wait for the boys to finish the show. Because Frisco is 70 miles from home and the venue isn't in the greatest part of town, we would appreciate you lifting us up.

God bless y'all for still being here.

Love,

Eric

PS - "haboob" - (hə-bōōb') n. A penetrating sandstorm or dust storm with violent winds, occurring chiefly in Arabia, North Africa, and India.

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Day 399 - July 19 - Performance

I occasionally dabble in the art of verse. This morning, I was pouring my heart out in prayer and wondering what I should blog - I know it's been a few days, yet my heart was empty. As I prayed, this freeform verse just started to gel in my mind. Please forgive me if poetry isn't your bag...

Performance -

I stand on stage, with spotlighted eyes.
This is it - the performance of my
life, and I
don’t
know the lines.
I move, I act, I speak.
Although the room is dark and I
cannot
see beyond the stage,
an audience watches.

Who are they? What do they see?
This production is for One
and I wonder -
is His seat filled?
Or empty?
Could this be some joke played
to mock, or
is this but a rehearsal? I cannot tell.
My eyes are blind to all
but the stage.

I should look to the Director, but
I cannot see Him.
What should I say? Won’t someone
give me my lines?
“IS THERE A DOCTOR IN THE HOUSE?” I need a doctor,
my heart is failing. I cannot
act this play anymore, my halting words
do
not come;
and the unknown audience sits.
Silent.
Expecting more.

Did He come to see this play?
He should have -
He wrote the thing. He directs it, and I
tapdance
to His pleasure.
I don’t even want to be in it, but this
is
the bondage
of my freedom;
the weight, and wait, of my
release.
I want off this stage. I want that damned
and damning
spotlight to shine on someone else for once.

Do you hear me, Director? Do you hear?
Can we take a break? Is there an Intermission?

And all the while my mouth moves,
saying words. My gestures, my actions, fall
in plain sight for an Audience
of One.
I squint my eyes against
the light - did He
come
to
this
show?
I cannot see...

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Day 395 - July 15 - Road trips and forearm movement!

Yesterday Cherié, Josh and Connor took off on a little road trip while I was at work. They headed about 30 minutes down the road to Casa de Fruta, which for you non-locals is a tourist-trap sort of place where you can buy overpriced fruits, nuts, wines, and souvenirs, while also looking at buffalo and antique farm implements and such. I make it sound a bit hokey, probably because I think it's a bit hokey - sort of like "The Thing" in Arizona, but without Hitler's staff car. Anyway, this place is more of a glorified fruit stand, but we always manage to enjoy ourselves while we're there. Connor likes to go there every once in a while, the result of his grandparents' near-ritualistic stopping there each time they drive down from Washington (I'm teasing y'all, Granny & Gramps! Love you!). Anyway, the three of them took the van down for the afternoon, and so there were three or four bowls of flavored pistachios, cashews and almonds waiting on the counter when I arrived home from work. I did enjoy the fruits of their labor, so to speak!

We interrupt this program for an important community message -

I mentioned the following information briefly to logged-in members of the site through the Chatterbox almost nine hours ago. If you're a member of the site but you're not logging in, there's stuff you're missing! Come on in!

The exciting part of the day was still to come, however, just before we helped Connor to bed. Cherié was helping Connor with something in his addition while I was reading in the living room, when she suddenly called, "Eric, get in here! Hurry!" Well, that sort of thing shouted from the boy's room usually gets a fairly prompt response, and this time was no exception. Once my feet got back on the ground after my sub-orbital launch off the couch, I barreled into his room expecting to be leaping into some sort of fray, but not this time - they were just calmly looking at me, which brought me to a screeching halt. "What's up?", I asked in my best faked-nonchalant attitude as I slowed down and sauntered unconcernedly into the room. See how cool I am?

Cherié only said "watch this", and so I watched as Connor, with a visible effort, managed to roll his left forearm and hand side-to-side about a quarter of an inch or so! This is the first time he's had movement in his arms - all the things before have been in his fingers, so we're really pleased to see the movement progressing.

Needless to say, this was very exciting! So we are praising God for this next bit of progress as we continue to lift the boy up for healing. Please take a second, as you pray for Connor, to thank Him for this step and those to come.

E.

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Day 393 - July 13 - "Say again, over."

That's what we Air Traffic types say when we want someone to repeat what they just said. Well, the "say again" part, anyway. The "over" part means "I have finished my transmission and am awaiting a reply", and isn't used too much these days. Usually only when we can't get someone's attention on the radio or something.

Anyway, I'm a bit fixated on what I wrote the other day, the bit about how an employee can make a suggestion to their boss, so I wanted to go back and touch on some aspects of that again. I've been thinking about that because in the place I work, there are nine other supervisors like me, and about 85 controllers, and it's pretty rare for two or more of the supes to respond to something the same. What I mean is that I might respond to a suggestion one way but another supe might respond to the same suggestion completely differently.

Now, I'm not the best boss on the planet. I'm too full of pride, too easily distracted, too egotistical, and too focused on doing things my way to make the best decision with the best possible outcome for everybody involved, every time. In other words, I'm human. But I always have tried to be a good one, and over the last year I've been making a concerted effort to be Christ instead of just being a good boss. Does that make sense? I figure Jesus would have made the best Air Traffic Supervisor ever, so if I could just do my job a bit like He would, it should work out OK.

Anyway, because there are ten of us, a controller can be pretty confident that s/he will at some time or another run into differing responses on the part of the supe - one might say "that's a good idea, let's do it" while another one might say "Look,I told you to go do this thing". Another could say "Yeah, I thought about that, but I still want to do...", or "Just do what you're told". I've even, in extreme cases, seen responses akin to "Don't get insubordinate on me!"

Now, from the controller's point of view, the difference lies in "who is the supervisor in question?" and "what kind of mood is s/he in?" The answer to those questions will not only determine what kind of response a controller can expect from a suggestion or question, but also determines if they should even ask. Sad, but true. That's what we get when we deal with humans....

But praise be to God that in the things that matter here, we aren't. Dealing with humans, that is. We deal instead with a God that is mysterious and awesome and far beyond our ability to comprehend Him. Which, in the above situation, might make us decide it isn't even worth it to ask the question, except that He's thought of that. He tells us to ask! He not only tells us to ask, He tells us to ask over and over again! If an employee kept pestering me about something, I'd probably get pretty tired of it - but not Him. Isaiah says He "does not grow tired or weary"!

Not only does He tell us to ask, and to just keep pestering away, He also tells us He's the same today as He was yesterday and will be forever. And that's cool - because it means I don't have to worry about who's got the watch, or what kind of mood He's in, or whether He's chapped off at me for that stunt I pulled last week, or whatever. Because He is dependable and reliable and can be counted upon.

See, I told you Jesus would make a good Air Traffic supervisor... 8-)

We've been having a few tough days with the boy this weekend - he hasn't been able to sleep well, he's having a lot of pain in his chest, as well as his shoulders and shoulder blades, and his normal level of medication doesn't seem to be quite taking the edge off like it usually does. This is compounded by the fact that it seems that these are pains from new areas - lower in his chest, in his shoulders, etc., and so the question arises "do we really want to mask sensations that might be coming from newly awakening nerves?" But the pain elevates Connor's heartrate and lowers his saturation levels, causing even more adjustments, and we're kind of chasing the ideal around as we try to keep him comfortable.

Last night he was able to shrug his left shoulder about a centimeter, too! So all these things are conspiring to make him uncomfortable while also making us cautious about how far we can go to help him be comfortable.

So once again we come around to "Please pray for us", that Connor's movement, control and sensation would increase, and that we would have wisdom to understand the best balance for him during this time. Also, that we would be able to find and get the rest we need to carry on - last night was better that the previous few, but multiple nights of numerous and frequent interruptions are taking their toll on all of us.

We cannot express our appreciation of your support for us. Our prayer is that God would richly bless you for your faithfulness to us.

E.

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Day 391 - July 11 - More lessons from ATC

I supervise a bunch of Air Traffic Controllers for a living. For the most part, they're a group of professional individuals who do a demanding job well and with pride. But, like any other group of individuals, there are differences in people.

I was working the other day, giving direction to ensure the operation continued to function safely, and I happened to be on the watch with a very broad spectrum of people. First, I had the group of people who, when given direction to go do a task which was difficult, or distasteful to the individual in question, figuratively shrug their shoulders and do the task assigned. No complaining, no avoidance, no gripes. While they may not like the assignment, they will still do as they're told. Then there are always a few, who, when given the same exact direction, seem more devoted to giving me a bellyful of "I don't want to do that" than actually completing the assignment.

As I worked, it dawned on me how much more I appreciate the folks in the first group - those who will just belly up to the sector and get the job done. As a group and individually, I have much more respect for these folks than I do for the ones in the second group. And suddenly it was as if big chunks of epiphany had dropped into my bloodstream - "Hey!" says I, "when I am given a task from God that I don't want to do, how do I respond?"

Now, y'all have been reading along with us for over a year, and all of you just went "Wow, he finally gets it!" Yeah, I know - I'm a bit dense sometimes.

Anyway, to answer my own question, I often find myself in the second group instead of the first, at least when it comes to responding to God. And there's only one response to that - shame on me. I know my Commander knows what He's about; I know He works good for those who love Him and are called according to His purpose; and I know that He has given me a particular set of skills designed for the task He's laid out. So when I get an unpleasant assignment, it's time for me to see a bigger picture, square my shoulders, belly up and do the job.

You know, there's a sub-group of my employees. They're all in the first group, but there are some who don't hesitate to tell me when they see a better or different solution to the problem at hand. They say "Could we do it this way?" or "What do you think about...". And sometimes their ideas are better than mine, and sometimes their ideas do the same thing as my plan, just differently, and sometimes I opt not to change my plans. But sometimes I take their suggestions and run with them. And even better, sometimes when the outcome would be the same regardless of which plan we use, I go with their plan because they are valued and skilled employees who have my respect, and it brings them pleasure when I agree that they've got a good idea.

So this is the group of God's employee's, if you will, to which I want to belong. I'll take my best crack at any job assignment, because God's a pretty good manager and wouldn't give somebody something beyond their capacity to handle and I want to be obedient. But I also can see a different way to proceed, and so I'll bring my request to Him for a decision.

Because sometimes a good boss will change their plan at the behest of a good employee.

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Day 388 - July 8 - Praying for Purpose

Here's one I didn't foresee (which shouldn't really surprise me, given my track record on predicting the future) -

We've got another prayer request for you - we need a sense of purpose. Cherié said to me yesterday that there's no reason to get up every day, and I understand her completely. Our life is for the most part now completely focused inside these four walls. And while we hope and pray that this won't last indefinitely, it looks, tastes, and smells like it's gonna last indefinitely. I mean, we really do believe that this is a temporary thing for Connor and for us, but if we're honest there's a lurking fear in the back of our minds that "temporary" could mean "until he dies and goes to heaven" - which is still temporary, but not the kind of temporary we want. And the old "God is a grumpy old man that sits far away and messes with our lives" part of my makeup says that's just the kind of thing He'd do. Now I know God's not like that, but don't you have that kind of image of God sometime, leftover from Sunday School or something? Yeah, me too.

So we get up every morning and face another day that is exactly like the one before it. Sorta like the movie "Groundhog Day" without all the excitement. At least I get to go push airplanes around - Cherié and Connor just face it day after day after day.

Now, before you say "You guys need to get away", that's not what I mean. I'm not talking about physical tiredness, although that plays a part. I'm talking about soul tiredness, and the sense that if this is the sum total of our existence now, we want it to stop. Soon. And trying to exist with that view pressing in on us all the time is gonna do us in, and I'm not completely sure I don't mean that literally.

So we need a purpose beyond "live day to day and make sure Connor is taken care of". Seriously. That's my prayer, and my request for you today. That God would show us, and that we would find, recognize, and embrace, a legitimate, real reason to keep on keeping on. Something that will stir us and motivate us. Something that will draw us a few more steps through this valley.

Man, I sound like I'm "feeling sorry for myself", but that's not it. I mean, I do feel sorry for us, but this is still legitimate in that there's got to be a reason outside of us for God to be taking us here to a place where physical interaction and effort are all but impossible - we just can't see it.

So I'd appreciate your prayers - I know I say that all the time, but I'm learning not to be surprised that there are still folks who pray for us. Thank you thank you thank you.

E.

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Day 386 - July 6 - Independence Day

Well, it's been a busy weekend. We celebrated the Fourth of July in style, managing (with the help of our friends) to get to the parade just before it started. We were so close to being late that when we pulled out onto the parade route in order to drive the 100 feet necessary to get to the parking spot they'd reserved for us, we were actually between the front police car leading the procession and the motor officers behind him! I guess I should have been waving my hand out the window... 8-)


Connor and Josh then spent some time at a friend's house for a couple of hours, but Connor wasn't feeling well so they came back home. We got the boy into bed for a couple of hours and he felt a lot better, so we ventured out to see the fireworks with some other friends.


All that excursioning (is that a word?) wore everybody out, and we spent the rest of the weekend taking it easy. Connor manages to still sit up until late, goofing off on his computer with his friends - Cherié and I, on the other hand, stagger off and collapse into bed. Fortunately, we may have figured out one of the problems that's been giving us grief over the last week.

You may remember that Connor has been having trouble staying saturated with O2 at night. He's fine sitting up during the day, but lying down at night has been giving him grief. We've been trying to figure out why, since he's been doing so well for all these months, and we've been concerned about the damage done to his lungs by pneumonia, and things like that. Well, last night about 3 AM Cherié discovered a small leak in one of the components of the vent tubing. We replaced that, and what do you know? His sats went right back up to where they're supposed to be. Makes me want to do my Homer Simpson impression - "Doh!" It's strange how our minds jump right to the more serious and complicated answers instead of thinking of all the simpler, more plausible explanations first...

Thanks for continuing to journey with us here. It means so much to us that you're here!

Eric

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Day 382 - July 2 - Another tough day and night

Connor spent yesterday feeling poorly - no real symptoms of sickness, just generally what we in our family refer to as "punky"; a general malaise and tiredness with no specific cause. He did get up into his chair, but spent much of the afternoon napping in the living room.

Although he felt a bit better in the evening, his night seemed to be somewhat restless. He and I wrestled a number of times with him being unable to get comfortable because he couldn't get his ear to lay the right way on his pillow. Imagine your life if you were unable to move enough to get your head comfortable on a pillow...

I was so grieved by his struggle for some sort of comfort, and I silently continue my cry - how long, O Lord? How long must he suffer like this? Rouse Yourself! Rise up and rescue him, and glorify Your name in the doing.

I'm reminded of the chorus of the Kutless song "Perspective", which asks -

"Why can't you see that freedom is sometimes just simply another perspective away?
Who could you be if your lens was changed for a moment,
Would you still be the same?"

I've gotten a number of reminders this week to keep my perspective on what God is doing through Connor's situation, and I admit that A) I often find it difficult to keep focused on the perspective that God is doing something great and good through us in this place; and B) that keeping my faith and sight on that makes it easier, or at least more bearable, to continue this journey. But to some degree, I also reject that thought as bogus - it's extremely seductive to think that if I could just see a situation the right way, I could move along in a happy fog of blissful nonchalance because my perspective is right. But if God only moves in my life because I see things a certain way, is He really God? The entire Bible - every page, every Sunday School story, every character's life and every word written in that book - is a story of an incredible Person who explodes into the everyday existence of Mankind; manifesting Himself unmistakeably in the very real lives of very real people. Moses didn't have to change his perspective to see the burning bush, it was right there where he could feel its heat and see its flames. 450 prophets of Baal got their perspective changed in 1 Kings 18, but it wasn't because they thought "If we just look at things the right way, then we get what Elijah is trying to do". No, their perspectives were forcibly changed when fire leapt out of the heavens and devoured the hilltop - in realtime, in front of their eyes. The stories go on and on throughout the Bible about God bursting onto the scene with glory and power and majesty. So while I can appreciate that a perspective shift can help us deal with this walk, I reject the idea that it's the purpose of the journey. I cannot wait to see my God explode onto this scene!

Y'all got any thoughts on that?

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