Day 379 - June 29 - Subconscious movement?

A couple of days ago (don't ask why I didn't post this immediately - I don't know!), at the end of the day, we were getting ready to move the boy to bed. To set the stage, let me describe how this goes - Connor's chair is placed with the bed to his left. We take off the stuff on the left side of the chair - foot and arm rests - and with me facing him, we undo the various restraints so I can lift him into bed. There's a few moments during that time when the potential exists for Connor to fall over (because of the lack of restraints - remember, he can't hold himself up right now), but for the most part he can sit there without any help and be balanced in his chair. Even so, Cherié usually kneels on the bed from the opposite side and helps stabilize him with her hand. Well, on that evening, Connor was in a really good mood and was entertaining himself, and us, as we worked by tossing his head to the left, which was causing him to tip over toward the bed. Cherié immediately jumped in and pushed him back upright in his chair, then would straighten up - only to have the boy do it again. It took her two or three times before she caught on that he was messing with her, and we were all laughing at his antics and her reaction. After a number of times with Connor continuing to throw his head sideways, him tipping over, and her pushing him back up, she finally said something along the lines of "C'mon, sit up!" What was interesting was that when she said that, he was at that moment tipped way over on his side - and he sat right back up.

I mean, HE SAT UP! All by himself, no help from Cherié or me - he just sat up. You should have seen the looks on our faces! At the same time as Cherié and I both said "You did that yourself!", Connor's eyes bugged out and he said "How'd I do that? I've gotta figure out how I did that!"

Wow!

This wasn't a spasm. This was clearly a massively large controlled movement of his upper body against gravity - he went from a position where he was tipped about 45% off center and pulled himself back upright. There's no question in my mind that it was a controlled response to what Cherié had said to him.

He immediately tried again and again to make it happen, but unfortunately to no avail. It appears that his body's not yet ready for commanded movement in that degree, but somehow there was signal there - maybe subconsciously his brain is able to communicate when his conscious mind can't for whatever reason. Still, it's amazing, isn't it?!!

So we are reminded once again of God's promises to us, and we are able to gird ourselves again for another few steps on this journey. We continue to trust God to be faithful to His word, and continue to pray, believing that we have already received our heart's desire - to see our boy standing and made whole, healed by the name of Jesus Christ, glorifying Him in his words, actions, and life. Amen and amen!

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Day 377 - June 27 - You're welcome to come in...

Hey, all y'all who are reading these words - I want to specifically invite you inside the website to see what all's going on in the community! This site is trying to be more about you and the others who have connected through Connor's story, but it can't be if you don't come in and play!

You log in using the little translucent window above the photo, on the read "ConnorWatch Community" banner (upper right side of the screen). That opens a window that lets you sign in or out, or create an account if you haven't already. Consider that the "front door" that lets you into the site! You can also have the site "remember" you, so that when you click to log in, your screen name will already be in the window ready to go. Easy, right?

So, come on in! Kick your shoes off, and get to know us. Let us get to know you. We're looking forward to it!

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Day 376 - June 26 - Finally photos!

OK, the photo uploading problem has apparently cured itself, and I'm finally able to post the photos from the zoo trip that would go with the post from Day 372 ...

Joelle makes the sound of a giraffe - "Braaaaw" (while also holding your hand above your head to make the mouth - that's important) -

"Everybody point at the giraffes!"


Connor goes head-to-head with a silverback gorilla -


In an effort not to alarm anybody, Alan asks himself "Were we supposed to make a left turn at Albuquerque?"


We took turns being different animals -


Good friends, close family, all in one shot -


Don't ask...


Joélle at the prairie dog exhibit -


A good day!




Sorry I had to put these in a different post - but I thought you might like to see them.

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Day 375 - June 25 - Pillars!

Just to let you all know... todays exercise with Connor went well... Good time off the vent, and tons of purposeful toe movement on both feet!! The lines of communication are open; just another pillar to show us that God is moving! It makes Connor smile to see the movement of his toes as he works hard to get those messages sent through the swollen pathways of the spine.

God is good!!

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Day 375 - June 25 - Ventilator Clarifications

There has been a few inquiries regarding Connor and the vent. Let me start by saying that Connor is still dependent on a ventilator but with work and time, and of course our God, he will be free of this anchor. Eric's last post regarding a disconnected hose was not that of the ventilator but rather that of a secondary optional hose that delivers extra oxygen to the mix. Connor is currently breathing regular room air just as you or I do. The vent is acting as his diaphragm, bringing room air into and out of his lungs. As you all know, Connor has been showing great signs of a now functioning diaphragm, though weak due to a lack of use, it is working. Praise God!! So like any other muscle in our bodies, this muscle needs some time to become stronger. That means regular work outs.... i.e. breathing apart from the vent, and slowly building up to full days off the vent.

So when Eric spoke/wrote about a vent hose being disconnected, he in no way meant one of Connor's air supply lines. It was only an extra line we can use to supplement O2 when necessary. The last few nights have been rough. We believe Connor has a small cold, but is showing signs of already doing better, as was witnessed by a WONDERFUL good nights sleep last night!! Praise God and thanks for the prayers.

Anyway, I really hope this clears up some confusions regarding the ventilator. Connor did not spend the night off of the ventilator. However, Connor will be free of this life supporting system one day. From the beginning, Connor has told us that he would be free of the vent. There is no doubt in our minds that he is correct.

Keep watching and keep praying... this generation needs to see a real miracle. I believe Connor is that miracle.

Love you all,

Cherie'

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Day 373 - June 23 - Dangerous errors

Well, for those of you members who have been logging into the site to check the news, you already know what I'm blogging about tonight because Cherié mentioned it briefly in the Chatterbox. For those of you reading this without logging in, we figured out later this morning why we were having such difficulties keeping Connor's O2 saturation up - what I euphemistically call a skinware problem - operator error. During the night, Connor's difficulty in breathing was causing his saturation to drop below 90, so we added supplemental oxygen to his ventilator in an effort to keep his O2 levels up. I connected all the hoses and fired it up, and we managed to get his levels up to 91-92 (normally he's above 97%). We watched with him as he passed a difficult night, and this morning his O2 remained in the low 90s. We couldn't believe that the O2 wasn't working better.

It was only an hour or so after I left for work that Cherié discovered that the oxygen hose had come disconnected, and he actually hadn't been on oxygen all night.

Of course, I felt like an idiot for causing the boy such discomfort all night. As soon as she plugged it back in, his saturation rose to the high 90s and he immediately felt much better.

So, he's doing much better today. Once he got up, whatever reason there was for the initial lowering of the sats went away, and he spent the day feeling much better.

Apparently I need to count myself in the potential hazards Connor faces, so please continue to pray that we can manage this situation while it lasts. Lord, move Your hand quickly!

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Day 373 - June 23 - Oxygen please...

A quick post to request some prayer for the boy - he spent the night uncomfortably, with a seeming inability to get enough oxygen into his system. From about 11:30 PM, he has struggled to keep his oxygen saturation above 90. We finally resorted to supplemental oxygen, but even that is only keeping him at about 90-92%.

Obviously this isn't good, although we've had previous situations like this. The difference this time is that the O2 doesn't seem to be making much headway, and so I bring it to you to help us pray.

Additionally, Cherié in particular was up most of the night with him, and she's exhausted right now, and I am scheduled to leave for work in an hour. Please be praying that as she sleeps this morning, that she is restored enough by her rest to make it safely through this day while I'm at work, and that Connor's saturation would return to normal levels quickly as this day begins.

Thank you for your continued support - it is things like this that remind me of the knife edge Connor lives on, and your steadfast help and encouragement lifts us up. We really, really appreciate it.

Eric

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Day 372 - June 22 - Pics from last week (NOT)

OK, here's the anniversary update, only a week late!

To mark the one-year anniversary of Connor's accident, Joélle, Alan, Connor, Josh, Lexi, Cherié and I decided to take a little road trip, so we loaded up the van and ventured farther than Connor's yet traveled away from home this year - all the way to the San Francisco Zoo! It's only about 70 miles from the house, but being that far away from all the stuff that helps us survive this existence was a bit scary. But we did it!

Unfortunately, there seems to be some glitch with Blogger, the online software I use to post to the blog, and it's not letting me upload any pictures right now. Since I've tried four times now to upload the images with no success, and I'm running out of time before I have to leave for work, I'll just post the story and try to add the pictures later. Sorry!

Anyway, we had a great day at the zoo - Joélle imitating each of the animals as she saw them (I'll have to figure out a way to record her version of what a giraffe sounds like and get it on here somehow - priceless!); Josh goofing off on every statue he saw; Alan running up to the lion's exhibit, playing the theme from "Lion King" on his cellfone and shouting "Hold up your children!" to the bemusement of the other visitors while we rolled with laughter; Lexi deciding that nearly every animal in the zoo was scary somehow, and Connor laughing when the big silverback gorilla decided to quit sitting around and suddenly leapt up and slapped the glass directly in front of the boy. It was a very enjoyable trip with the kids, and each of them added something to make the day a special one.

That evening we had a number of people over to celebrate Connor's life, gathering in the backyard to talk a bit about how thankful we are to God for bringing us this far on the journey. That too was a time of laughter and celebration with our friends around us, and was a much needed acknowledgement of God's blessing on us through this past year. I don't have any pictures of the evening, but since I can't post them anyway... 8-)

As I type, Connor and Cherié are still sleeping, and the house is quiet. Today marks the start of the first full week I'll be at work since Joélle and Alan left, and already I'm feeling the difficulty of this routine and how it wears on Cherié, Connor and me (thanks for noticing the grammatical error, Mom. I had written "Connor and I", for those who didn't see it originally. Leave it to my mom and the memory of my English-teaching Grandmother to point these things out to me...). Please continue to lift us up, that there would be joy to be found here in our home, and that we would be able to find laughter and smiles - it is so easy for this existence to fade into gloom, and our spirits just can't take it. My prayer is that each of us would find joy in each day and be able to share it with the others, and I would greatly appreciate your support in this as well.

Speaking of appreciation, I wanted to briefly mention mine for your steadfast support and care for us. Y'all help so much in making this situation bearable, and I want you each to know that. Knowing that you continue to pray and believe with us is immensely helpful, and we value it so much!

I'd like to ask those of you who comment on these posts to do me a favor - if you desire to comment on any of these postings, would you continue to attach them to the post the way we've done it in the past? The Chatterbox is very convenient, but it only keeps comments there for a short period of time, and doesn't attach your comments there to the post you were referencing. This means that there's a good chance that we will miss what you said because it's scrolled off the bottom of the Chatterbox, whereas if you comment on the blog itself, your comments connect to the post you were referencing and we'll be able to see it even if some time goes by between the time of your comment and the time someone looks. I really appreciate your consideration in this!

Again, thank you for your faithful walking with us through this valley. God bless you today and this week.

Eric

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Day 371 - June 21 - Power's on!

OK, we spent the afternoon in the van, and we're back home now with the power running. We had thought we would be well prepared in the event of a power failure, but there were a number of things we didn't think of. We'll have to give some thought to finding the funds to get some sort of generator...

I appreciate the birthday and Father's Day wishes from everyone! You guys are great...

Now I'm going to end this post so I can go work on one with pictures about the anniversary earlier this week. Look for a new post soon!

Eric

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Day 371 - June 21 - Power Failure

Well, this is from my phone briefly as we've lost all power at home. The electric company says it should be restored within 3 hours or so. This wouldn't be too much of a problem if I'd remembered to charge the vent batteries last night. We're heading out to the van where we can at least keep the vent running.

Like my mom always says, if it's not one thing, it's another.

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Day 369 - June 19 - Test Results

Connor's tests this morning went very well. I'm not sure why I'm surprised when our prayers are answered - it seems like the more faithful God proves Himself to be, the more I'd come to see that as normal. But for some reason I persist in being surprised by answered prayer. Weird, huh?

Anyway, Connor did the vital capacity tests today, in about six different positions and configurations (trach cuff open, trach cuff closed, ab binder on, ab binder off, etc.). The results? Regardless of his position, he was pulling at least 200cc's or so of air into his lungs, with some positions seeing between 450 and 600cc's! Remember, in Fresno they told us he had to pull 500 to be considered wean-able, and he could only pull 50. The RT told us today that they had done another vital capacity test while Connor was in the hospital there at Valley, and the breath he pulled at that time didn't even trigger the test machinery. So to see 450-600cc's today had both the doctor and the RT exclaiming in surprise! The doctor's jaw dropped and he was dumbfounded, and said that Connor's diaphragm was definitely working! When she saw the RT leaning against the wall with her chin in her hand, Cherié asked her what she was thinking. The RT said that she had been in the operating room in October when the diaphragmatic pacer surgery failed, and that Connor's diaphragm hadn't responded at all then, so to see 600cc's now - she said "I don't understand how that can happen - it's an anomaly."

Wow, if that's not answered prayer, I'm not sure what is. So all in all, it was a very good result and a very good morning because of it. And I remember that God is good...

After the appointment, we went over to the SCI rehab section of the hospital to see if there was anyone we could say hi to, and we ran into some of the nurses and therapists who had worked with Connor last year. They were excited to see the boy, and one of them asked us if we would be willing to meet a young girl in Connor's situation who was in rehab there. We agreed, and although we weren't able to meet the girl, we spoke at length with her mother. This 19-year-old young lady makes the second recent SCI patient we've run into that's within an hour of us. She's really struggling with her situation, not unlike Connor, and we offered to help in any way we can.

I bring this up so I can point out another cool feature of the new site - the ability to refer folks to other situations. You can check the forum to see other opportunities for support and prayer in the "Opportunities to Serve" category. Hopefully this community will reach out to this other hurting family as well.

Daylight is coming!

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Day 369 - June 19 - Vital Capacity Test

Just a quick update and request (I know I keep saying that - I've got a lot to tell y'all about the anniversary earlier this week, but so far website housekeeping and such has taken much of my blog time. Stay tuned - it'll get here!). Anyway, I wanted to accomplish two things quickly this morning - first, I want to enlist your prayer support for Connor's appointment this morning. Connor has to get his vital capacity tested, which is a measurement of how much air he can draw into his lungs. They did this back in Fresno long ago, and if I recall correctly he was drawing about 50cc's while you and I are drawing as much as 20 times that. The doctors there said he had to draw at least 500cc's to be considered wean-able from the ventilator. I don't know if that's a standard rule of thumb or if that's just a number the Fresno docs pulled out of their hats, but either way I would love to see Connor succeed wildly at this test. It doesn't seem like much - suck some air through this straw, please - but it will be an indicator to our new doctor of Connor's potential, as well as laying a benchmark to measure against later. So your prayers for his success would be greatly appreciated. His appointment is at 10 o'clock this morning, for those who want to be praying...

I did say I wanted to do two things here this morning. The other thing is to invite those of you who are reading this without logging into the site to do so, and this is a good example of why it would benefit you, and the rest of the community, if you did so - the info about Connor's appointment, and a shout-out for prayer, have been up in the member's section since last evening, when Cherié put it out in the Chatterbox. That means that the breaking news and information is available sooner to logged-in members, since it is usually more difficult and time consuming to post up to the blog. Cherié's been logging in to the new site for only a day or so, and she's got many of the basic features of the site figured out and using them, and you'll see much more real-time communication inside the member's section than you will if you don't log in. Plus, we get the benefit of having you taking part in the community! So it's a win-win for all of us when you choose to log in. As I type this, there are six members logged in, and 12 other people on the site who are missing about 90% of the site's new content by not logging in - won't you please come in and join us?

Thank y'all for your prayer support this morning, and for your continued patience as we grow through this transition.

Eric

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Day 386 - June 18 - Community Housekeeping

Well, waddya think? We've been up on the new site for a bit over 24 hours, and Brad is frantically working to address the bugs that show up anytime we have such a major upgrade as this. Because many of you may not be familiar with this sort of website format, I want to briefly help y'all out as you find your way around our new Community home.

First, I want to encourage you to log in and fiddle around with all these new features. There's a whole bunch of really neat stuff available to you now that's been designed to make it easier for you to take part in this community, and the best way to get familiar with them and find your way around is to spend a bit of time doing just that. The menu bar across the very top of the page, for example, will take you to the usual places you'll remember from the previous site - Blog, Guestbook, and Home, for example - but you'll also notice new things in that bar as well. Let me give you a quick rundown -

Home - Just what is says. The front page of the website. This is the page you'll want to Bookmark or add as a Favorite.
Guestbook - The same as the previous site. Allows members and non-members alike to post notes.
Blog - This is also the same as the previous site, where I will continue in the vein I've been blogging for the last year. We may need to get a new name for this section...
Happenings - this is new page where the admins can post information which affects the community as a whole. Check it out today and you'll see a How-To article on updating your profile, and a welcome message. This page acts like the blog - newest posts will be at the top.
Forum - this is the discussion area of the site. Take the time to explore this area - under the "Categories" tab you'll see sections for all sorts of discussion topics. You can start, watch, and/or comment on any topic here. The "Recent Discussions" and "My Discussions" tabs will help you stay on top of what's going on, and you will can get and manage email notifications so you stay abreast of all this stuff.
Community - this place has all the personal profiles, member photos, and many facebook-type features, most of which I haven't even begun to explore. Have fun!
Archives - self-explanatory, in my opinion.

Each of these pages has many features to explore, and you'll notice many of them stay the same from page to page - the Chatterbox, for example. I hope y'all find these new features to be helpful and enjoyable to your ConnorWatch Community experience!

Finally, let me assure you that we are aware of the bugs, glitches, and other items that are popping up in the strangest of places - header bars that are the wrong color, windows that are seemingly endless, or formatting errors of one sort or another, to name a few. If you run into something like this on the site, take the opportunity to check the Forum pages to see what errors have been found already, before you start contacting Brad. He's swamped with all these things and is working hard to fix them as quickly as possible, and it helps him if you take the time to see if what you're running into has already been brought to his attention. That way he can devote his limited time to fixing things, instead of troubleshooting a problem only to find he is already dealing with it!

There's a search window on each page if you can't find what you're looking for; there's messaging features for members in the Community section; there's so much just for us - the family that is ConnorWatch. I pray it meets your needs as you continue the journey with us.

Eric

Oops, I almost forgot. Once I get up to speed on the "Happenings" page (it works differently than this blog - see, I have to get used to some new things too!) - anyway, once I get up to speed, this sort of posting will go into the Happenings page instead of here. That will keep the original purpose of this blog intact. Sorry for the interruption!

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Day 367 - June 17 - The Community is here!

Well, you probably noticed that the new site is finally up and running! You'll see on the home page some instructions about logging in - if you joined CW after a certain date, or changed your password after that date, you'll need to follow the instructions on the front page. If you joined CW before that date, you're all good and should be able to log in to the CW Community without problem.

If you run into problems, contact Brad through the Contact page on the top of your screen and describe your problem to him. We'll be building a FAQ file for this new site as we run into the issues.

I would ask you to log in when you arrive - not only will that let the rest of the community know you're here, but you will also be able to take advantage of the new features this new format allows. If you're familiar with Facebook, you'll probably recognize many of these things, plus all sorts of new stuff. I'm already fond of the "ChatterBox" feature on the right side of your screen once you are logged in.

Brad is already hard at work identifying the inevitable bugs, and is ironing them out just as fast as he can iron. Please be patient with him and with us - he's really worked hard to get as much of this move as stable as possible, but there are always some things that slip through.

We are very excited about the potential the move brings to this community for growth, connection, encouragement and support. Please - explore the site, upload a photo to go with your screen name, play with the new features, ask questions in the forums, look up CW Community members who live near you - the possibilities are exciting! Don't hesitate to let us know if you find a glitch, bug, or other undocumented feature - we want to get this as perfect for you as we possibly can, and will be working hard over the next weeks and months to make it so. In the meantime, log in (top right corner), dive in, and join in!

Waiting to see your face in the CW Community!

Eric, Brad, and the rest of the CW crew

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First Anniversary - June 16, 2009 - Pictorial

One year today. It just doesn't seem possible that only a year ago our world was so different. But while we often plead with God on this journey, today we're purposefully choosing to thank Him for Connor's life and for His provision for us as we travel this road. As we remember where we've been, we want to praise Him for what He is going to do, so I offer a simple visual jouney to see how far the boy has come...

One of the first photos taken after the accident -


Josh finally makes it back from NYC and joins us in Fresno -


Tracheostomy complete. The roto-rest bed means the battle against pneumonia had begun -


Remember the big sign? Thanks, WHCC! Joélle's yellow gown means the fight against MRSA has been joined -


The dreaded upside-down bed (AKA "The Iron Maiden"). Pneumonia War 2 -


Swallow test passed first try! That was so unusual that hospital staff stopped by to see it for themselves! Mmmm, Jamba Juice!


Closer to home. Santa Clara Valley Medical Center in early September. Still fighting MRSA. Note the neck brace and the big pillow -


Outside at Valley for the first time. Still on supplemental oxygen -


The first field trip -


Finally home! October 16, 2008.


Good friends and laughter. Lexi made that blanket for Connor, BTW...


The addition begins to take shape. Note the strap to secure his head -


Wheelchair rodeo!!!


November 29, 2008. The significance of this photo is that we took it to document Connor's new ability to move his own head forward -


Sorry, but I just love this picture!


March 2009. Notice his headrest has been removed -


The master chef at work while his cats look on -


Joélle and Connor out for lunch, late May 2009.



I hope y'all have enjoyed this pictorial. Take the time today to praise God who blesses us greatly, and thank Him for preserving Connor's life.

Thank you so much for traveling with us this year!

Eric

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Day 364 - June 15 - I guess I counted wrong somewhere

Well, if June 16, 2008 was Day 1, shouldn't June 15 2009 be Day 365? So apparently I missed my count somewhere along the way. Oops! If anybody figures out when the mistake was made, let me know and I'll go back and change 'em all. OK, maybe not... 8-)

Just a brief note to catch y'all up...Joélle and Alan returned from their honeymoon Friday afternoon, and Connor has had a good weekend being with them. They're busy scurrying around trying to get all their stuff ready to go back to Chicago Wednesday morning, but even sharing meals with them or watching a movie together is such an enjoyable time for Connor, and for Cherié and I as well.



Yesterday we were blessed to be visited (I'm going to try to type this in my best New Zealand accent) by me best cobbers Barry and Della from down New Zealand way. As it happens, they're also our only friends from New Zealand, but that's neither here nor there... 8-) These two Kiwis (his word, not mine) are on holiday for a month or so, and had intended to be at the wedding last week. Unfortunately, their plans changed at the last moment when a long-time friend had to go into hospital suddenly, so they missed the nuptials - but they were able to make it here finally and came by for a long visit with all of us. They were so pleased to see Connor again - these two are primarily responsible for all those red dots on the ClustrMap in New Zealand, and it was such an encouragement to spend time with them again. They were also very pleased to meet Alan for the first time and congratulate the two of them - I am blessed with such wonderful friends! Incidentally, if you desire something else to pray for, their friend Paul is facing a very serious medical issue and, while I won't give details that aren't mine to give, I am sure he would appreciate your prayers. Our Lord knows quite well what Paul faces, and so I know your prayers for him won't go amiss.

Anyway, while the kids took off to catch a movie, Barry and Della stood us for dinner (even though I tried to beat Barry to the waitress for the check - these Kiwis are slippery!), and we had a fantastic evening out. If the rest of the population of NZ is anything like these two, that country is truly blessed.

This morning I'm off to work again after two weeks with the family, so I'd appreciate your prayers for Cherié and Connor as they return to their daily routine; for Joélle and Alan as they scramble to complete all the things necessary before they leave Wednesday; and for me as I enter back into the ATC workplace.

God bless,

Eric

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Day 363 - June 14 - I love my Lord

I got up at 0430 this morning to do some of the routine tasks that have to be done during the night with Connor. I awoke with that "time to make the donuts" sense of inevitability, and stumbled downstairs. As I began to prepare, Cherié appeared beside me - she had heard some noises through the monitor, and being so tired she didn't even look to see if I was in bed or not, came down. Only when she saw me did she realize she didn't have to be up. As she turned to go back upstairs, she took a look at me and said "What's wrong?", to which I stupidly replied "I don't know how we can do this for a life". She objected "We're not going to...", but of course this upset her - she needs me to be strong and firm and resolute - and so she went back to bed upset and left me sitting in a chair thinking what an idiot I am for saying what was in my mind.

After feeling sorry for myself and praying for a moment or two, I headed back in to Connor's room - the task for which I came down still needed doing, and so I busied myself getting ready to take care of it. As I prepared, however, I found that the fan blowing on me was making me cold, so I walked around the bed to turn it down, and the click of the switch woke Connor up. He asked me what I was doing and I told him what I had originally come down for. He immediately went ballistic because I wasn't monitoring that procedure (I was on the wrong side of the bed when he first saw me), not knowing that I hadn't started yet. By the time we straightened out the misunderstanding, I was in tears as I worked. How CAN we do this for a life? Once I finished, I massaged Connor's neck to reduce the spasms he was having, knocked over a bunch of stuff in the cupboard as I tried to get him some medication (CRASH BANG BOOM at 5 in the morning), picked all that up, got him his meds, and all the while I'm in this fog of despair as I stumble around the room, trying to finish so I can just get back to sleep and not have to think about all this for a while.

I finally made it back into bed at 0520, and at about 0524 something fell in Connor's room, causing me to levitate out of bed. Assuming the same for the boy, I decided to grab my clothes and Bible and just stay up after I figured out what was going on in his room. I came back downstairs and made sure he was OK (an equipment cover had fallen over - no harm done) and Connor assured me he was alright, so I started the coffee pot and wandered into the living room to doze while I waited for the brew. And as I picked up a blanket with the intention of warming up on the sofa, I realized that the chorus of a song was going through my head - "Tunnel" by Third Day:

There's a light at the end of this tunnel
There's a light at the end of this tunnel for you
For you
There's a light at the end of this tunnel
Shining bright at the end of this tunnel for you
For you
So keep holding on

I hadn't been trying to find something to lift me, these words were just there in my head. "Wow", I thought, "I needed to hear that right about now. Thanks, Lord."

But being me, I immediately decide that this could have just been my subconscious rooting some lyrics out of my brain, and didn't have to be God speaking words of encouragement to me at all. So as I sat down with my Bible, I prayed - "Lord, as I open Your word, could I please have some confirmation that these words You've stuck in my head this morning are really from You, and not just something I'm making up to make myself feel better?"

And I opened the pages to where I'm reading this morning, which is Psalm 27, and I find verse 1 -

The LORD is my light and my salvation;
whom shall I fear?
The LORD is the stronghold of my life;
of whom shall I be afraid?

- and verse 5 -

For he will hide me in his shelter
in the day of trouble;
he will conceal me under the cover of his tent;
he will lift me high upon a rock.

- and verses 13 and 14 -

I believe that I shall look upon the goodness of the LORD
in the land of the living!
Wait for the LORD;
be strong, and let your heart take courage;
wait for the LORD!

Now, you just have to like that! And so another day begins, but at least now it's on the right foot.

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Day 361 - June 12 -Thanks and More

Quickly, a note of thanks to those of you who were praying for rest for us. We spent the night last night with Connor resting well, and Cherié and I only having to get up twice each during the night. This is a big improvement over the previous few nights, and the rest does us good.

A further request, however, is necessary. Connor has a bit of a cold, and is also feeling listless and tired. He has little appetite, and has turned down his favorite food for lunch today. It's clear he's not feeling well when he turns down sushi.

We don't have any idea why he feels this way, but we would sure appreciate your continued prayer for the boy as he feels like this.

Thank you all,

Eric

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Day 360 - June 11 - Dog Canyon

"Though I walk through the valley of the shadow of death, I will fear no evil, for You are with me;"

Back in my old stomping grounds, there was a place we used to go hiking called Dog Canyon. It sat on the edge of the Tularosa Basin in southern New Mexico, and made for a great day hike. I understand now that it's a historical site and there's a visitor center and everything, but back in my day here's how it went -

You got up really early in the morning, left El Paso, Texas, and drove an hour and a half out into the desert. At some point that only the more experienced people in the car understood, you turned the truck off the road onto an unmarked, sandy dirt road that twisted off toward the hills in the distance. After bouncing up the tortuous track, through washed out ravines and around all sorts of pointy-looking cactus, you rolled to a stop at the turnaround, the dust from your passage slowly settling over you in the morning light. The only sound would be the ticking of cooling engines and the noise a group of teenagers make as they get ready to start hiking.

You look around, seeing the slope drop away into the Basin back the way you've just come. Then, turning around to look forward, you gaze up at an impenetrable wall of rock, seemingly miles high, and broken in the middle by a large gap - Dog Canyon. It's dark mouth gapes at you, backlit by the rising sun, all in forbidding shadows. Already the heat is rising - it's the desert, you know - and you feel the urgency to begin climbing in order to get off the basin floor before it starts roasting you alive. Actually, you feel the urgency to get back in the air-conditioned truck and retreat back home, but all your friends are watching; so you shoulder your pack and start the climb.

At first, it's not too bad. The slope is gentle, the heat isn't too bad, and the trail is well-marked and broad. But soon it gets worse. The heat is skyrocketing toward 110F, and the trail begins to narrow and trip over larger rocks. The cactus presses in on the trail, making each step a cautious probe forward rather than an easy stroll.

Now, the slope steepens. Your breath gets faster and more labored, and sweat begins to fall. You stop to catch your breath and ease the straps of a pack that has somehow gained weight since you left the truck. The kids behind you come to a stop too, so you settle the pack and keep hiking.

Pretty soon, you leave the cactus fields behind, a small blessing that is immediately forgotten in the realization that it's HOT. The sun has crested the ridgeline, and is beating mercilessly down on your head as you trudge, exposed, up the side of the canyon wall. You stop for a canteen break, only to see that you've already drunk half your supply of water. You've been on the trail an hour.

As the trail climbs, the sky turns brassy as the sun blazes molten white. You wonder if this is what the fiery furnace felt like. Lines of salt mark trails of dried sweat down your face. You pass twisted, stunted trees - too small to offer shade except to lizards and scorpions.

Finally, real trees begin to appear, and shade mottles the trail as it dips off the canyon wall toward the floor. A small waft of cooler air drifts down the canyon, lifting your fevered spirit with the promise of reprieve. Finally, with your canteen dry and your spirit drier, you stagger up to Frenchy's cabin, drop your pack, and collapse to the rocks for lunch.

Once you're refreshed a bit, you walk up the trail to the waterfall. It falls about 100 feet from the rocks above, dropping into a small pool before splashing down the canyon floor. It's an idyllic spot, even more ironic because there is no sign of it from below. No hint of green, no coolness on the air; even the water disappears before it reaches the basin floor far below, where you left the cars. But even as you enjoy this oasis, you know it can't last.

You see, the waterfall under which you stand hides the betrayal of Dog Canyon. Dog is a box canyon - there is no outlet to the high country. There's only one way in and one way out - the basin floor. The top of the canyon is blocked by a 100-foot tall cliff of stone. And so, after having refreshed yourself for a bit, you turn from it and begin the descent back into the furnace. Having left the garden spot under the falls, the trip back to the car seems twice as long, and twice as hot, and twice as dusty, with twice as many pebbles in your shoes, compared to the trip into the canyon - even though it's downhill now. The last trudge across the basin floor to the truck is hellishly long - no water, no coolness, no sweat left, only the idea that somewhere up ahead, lost in the heat mirages, is supposed to be a car you can get into, if somebody hasn't stolen it while you were gone.

The last few nights have felt a lot like a trek into Dog Canyon. Nobody here has gotten more than a couple hours sleep at a time, it seems - Connor has been in pain and discomfort each night all night. I know that sounds odd for someone with no sensation, but it's true, and all he can tell us is that it hurts. I think all of us had hoped for a chance to recover from the wedding excitement, but so far each night has been difficult. We would greatly appreciate your prayers that we might be able to get some rest. None of us are at our best because we're tired, and I in particular respond poorly to exhaustion. Tempers flare, patience erodes; it seems like the last shade on the planet is far behind us. But a coolness on the cheek foretells an oasis up ahead, when Joélle and Alan return from their honeymoon for a few days before leaving for Chicago. But that oasis will be very, very welcome, even if we know that we'll have to pick up our packs and keep hiking at the end of it all.

Fortunately for us, our Guide tells us that this valley of shadows is not a box canyon - it does have an end somewhere up ahead.

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Day 358 - June 9 - Setting your face

Well, the family is nearly gone, the crowds have dispersed, and I sit here this morning as the rest of the house sleeps and look out over all the things that have to be either put away, or returned to their owners, now that the wedding celebration is past. The extended Williamson clan that came out for Joélle's wedding said their goodbyes last night, and apart from one last cousin, we are alone again. It was so great to have the families here to visit, and their departure leaves a sense of loneliness and abandonment in my heart.

Of course, that makes it prime time for the enemy of my soul to make another attack on us, and so the very first night after most everybody leaves, the night we thought to ourselves "OK, at last we can get a bit of rest after the wedding chaos" - Cherié and Connor were up every hour all night long. I awoke out of my stupor at 0615 to find that Cherié had never come to bed at all. I sent her upstairs to get a couple of hours without interruption, and I've been back in to Connor's room to deal with stuff four times already in the two hours I've been up. This is definitely not normal, and my initial response is "Great! The moment we get back to our "normal", this starts!"

It is so easy to see this problem of ours as insurmountable, and so difficult to see God as omnipotent over it. I know in my head that since the second is true, the first can't be - but it's so hard to keep that in my heart.

I was reminded this Sunday to set my face and keep going by a dear sister who told me of a man she had heard speaking at his sister's funeral. He said that he wasn't a Christian, despite his family's upbringing and his sister's strong faith, and he said that the reason he wasn't a believer was because "Christians say a lot of things but they don't live them". Wow, what an indictment. It doesn't surprise me, knowing my own proclivity to not do the things I want to do - but it was a reminder that if my reflection of Christ is to be anything close to accurate, I need to consistently be practicing the things I preach. So in this early hour, surrounded by "well, this is as bad as it gets", I have been reminding myself that God is faithful to His word, which tells me that He is the same yesterday, and today, and forever; that He wants me to ask of Him, believing that I've received it; that He wants me to believe that He has authority and power to heal my son; and that He wants me to keep faithfully believing that He will move in His time, for His glory. And then I've been asking myself what someone who believes all that would look like, and the answer isn't "moping on the sofa because his life sucks right now". Instead, it should look a lot like "Man! I can't wait for the party to get started!" Hmm, not my usual M.O.! But here goes...

The morning of Joélle's wedding, Connor called us into his room and asked us to keep something quiet. He said he didn't want to steal Joélle's excitement, and so he asked us not to say anything until after the wedding. While he had been lying in bed waiting for us to come back in and finish whatever it was we had been doing, he had moved his left big toe ten times and his right big toe four! He was very excited to be able to do that on command, and we shared it with the family over the weekend. They (of course) immediately wanted to see this progress, but since by that time he was up in his chair with his slippers on, he settled for showing them his finger and hand movements. I think the best moment was when my sister Melissa held Connor's left hand and he squeezed her fingers a bit - she immediately got this big grin on her face as her eyes filled with tears, and she just hugged him and whispered words of encouragement in his ear. It was good to see someone else feel and see these small steps.

Now, my intellectual brain can run the projections and see that at this rate of recovery, Connor will be 143 years old before full recovery takes place, so two things need to happen - first, I continue to pray that God will speed Connor's healing, because I know that his recovery isn't a product of natural happenstance, but is directed and provided by the hand of a loving and all-powerful Creator; and second, that I would find the ability to lay down my reasoning and live right here in the moment, trusting God to faithfully move in accordance with His word. So there's a couple of prayer requests for you!

I'll try to post more photos when I get an opportunity, but in the meantime "thank you" for your continued faithful support.

Eric

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Day 355 - June 6 - Well, that's done...

Last night the wedding went off without a hitch. The weather was perfect, the ceremony was fantastic, the reception went really well (since it was filled up with folks we love) - all in all I'd have another wedding there if I ever had to stage another wedding, which I won't, seeing as how I don't have any more daughters, and it's the bride that coordinates all that stuff, so when Connor gets married somebody else can worry about the location, but if I did have to do it again, I'd do it there. They were wonderful and the evening was a rousing success (except for that bit about having to give my daughter away...).

Connor managed the evening well; we had a bit of a struggle with him getting too cold, but an extra propane heater solved that problem lickety-split. We did stretch the evening long enough that his vent battery started to run dry, and we had to get the vent plugged into the 12V socket in the van for the tail end of the night, but we managed. Here's a couple of photos (the real photography should show up in a couple of weeks) -



Pretty cool, huh?

So the newlyweds took off, and Cherié, Connor and I finally managed to get to bed about 0230 this morning. Then it was up three or four times during the night to respond to alarms, and out of bed by 0800 to get the day going. Since it's midnight now, I'm going to bed. I'll try to post more about the week tomorrow...

Good night.

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Day 352 - June 3 - If I only had a brain

OK, I have one, I just often wish I had a different one than I've got. I am reminded again how pathetic I am at remembering stuff - I find myself over and over again in a place where I am in despair (again) at our circumstances, and wondering (again) even if God even exists, and God in some fashion reminds me (again) that He's there and in control. The latest version of this repetitive tale has been playing out over the last week or so. I have found myself sinking further into depression - my time in the Scripture seems dry and empty, my prayer life seems to be hollow, like my voice echoing in an empty cavern, my relationship with my wife and kids seems impossible to maintain, with bickering and arguing and frustration abounding. I sat yesterday morning in prayer and just poured out my seemingly never-ending doubt, and of course there were no trumpets and fanfare announcing God's interest in the things in my life. Then, yesterday when I check my email, I got a note from one of those internet "friends I haven't met yet" - a fellow I "know" from a motorcycle forum. He just had a short note of encouragement for me, and attached a song with it. He described it as having wanted to send something over to me, but all he had was "this song that was playing today" and so he hoped it would prove helpful. Well, the only way I can describe it was "absolutely the thing I needed to hear right then". Thank you, Scott, for being willing to be led by the Spirit's prompting even in such a small thing, because it wasn't small to me.

Connor has been having a good week with his sister, Alan, and their friends amidst all the hubbub of the wedding prep. Despite some mechanical issues with some of the equipment, he's been traipsing around town with them in a fashion remarkably free of his parents. This is something we're thankful for, and also a bit nervous about. Still and all, it's a big step for him.

Joélle and Alan seem to be ready to get hitched. Alan's family arrived last evening and we had a great time putting faces to names. They are about as fantastic as you might expect of the family responsible for raising the young man who won my daughter's heart! We're looking forward to spending the next few days getting to know them a bit better.

Today marks the beginning of the full-court press towards the wedding on Friday. Today is all preparation for the meet-and-greet open house tonight. Tomorrow, of course, is the rehearsal, and then it's down the home stretch to Friday night. We have some concern about rain for Friday and it's impact on the outdoor wedding they've planned, so If y'all could endeavor to persuade God to push this low pressure system out of the way, we'd be very appreciative!

Also, an item for prayer about Connor's health. He's developed a small area of breakdown on the skin on his leg, which can develop into serious complications if it's not checked. Right now it's very small and not as bad as it could be, but we need to make sure it doesn't get any worse, so your prayers are appreciated in that area.

We really, really appreciate all of you intervening on our behalf. Thank you so much!

Eric

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