Day 107 - September 30 - Surgery tomorrow

I'm spending the night at the hospital tonight to ensure we're here when Connor goes to surgery in the morning. To recap, the surgery will place a pacemaker in his diaphragm, which if successful will remove Connor's dependency on the ventilator. Connor is the first person west of the Mississippi to receive this new device, so don't be surprised if you hear, see, or read about him in the press sometime soon. In fact, if you see anything in the media and could save a copy for us, I'd appreciate it.

Connor is a bit nervous about the operation because it's an operation, and also because he's afraid that the surgery won't work. Please be praying that the operation goes fanastic.

The surgery begins at 0730 PDT, and I'm 3/4 asleep. Goodnight...

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Day 106 - September 29 - The end of the alphabet

This turned out to be a pretty good day, all in all. Connor is now out of isolation; his fever has broken; he was really blessed by a song a friend wrote for him; and he felt like the day went well. Our next hurdle is the surgery - Connor is scheduled for surgery first thing Wednesday morning, although we don't yet know what time "first thing" is. As soon as we know, we'll let you know.

Please keep us in your prayers - I know you are, but I also get haunted by the idea that you'll get tired and stop. I'm exhausted, and Cherie and Joelle are too. Connor is too, although he's probably moreso than all of us. I'd probably stop if I were in your place, so I worry even though I know I shouldn't.

Tomorrow is "Z". We decided to let y'all finish this up, so we aren't offering any words tonight. We look forward to praising God with your words.

Good night.

Eric

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Day 106 - September 29 - One step forward...

I just got the word from Cherié that, after a shower this afternoon, Connor will be officially cleared of MRSA!

Thank you so much for your prayers in that regard. Being cleared will be a great blessing for all of us - for Connor in that he can more easily have visitors, move in and out of his room, and interact with the other patients, and for us, because we won't have to wear the yellow smocks anymore. Trust me, that's an improvement!

Connor also begins a rigorous set of treatments this evening, continuing through tomorrow, to ensure his lungs are at their best capability for the surgery and weaning process starting Wednesday. His fever is down. We continue to pray that God will get Connor off of the ventilator permanently, and we pray that if it's necessary for the boy to have this surgery, that he would be physically fit for it when the time comes.

Finally, another prayer request. It's possible that we may be thrust into the media spotlight because of this surgery. Please be in prayer that we would accurately and effectively reflect Christ in anything we say or do. We want to glorify Him in any exposure this brings us, and we also desire to have wisdom regarding what exposure the media might be able to bring to this blog. Please be in prayer about that for us...

Love y'all,

Eric

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Day 106 - September 29 - Updates

The doctors are doing a chest X-ray this morning because of the episode last night, but they seem convinced that it was caused by anxiety and not a physical thing. Connor is really being overwhelmed with fear and anxiety - he feels helpless to do anything about what happens around him, and so he is nearly always in an elevated state of anxiety. He really needs the Lord to minister to him in this, and to remember what he already knows. Please be praying about this.

The first of the two cultures for MRSA came back clear this morning! That's an answer to prayer. We need to wait until tomorrow for the second culture to come back, so continue to pray that the boy is finally over that hurdle.

Two big "thank you"s - first, to Brad for all the new upgrades on the website. Wow, bro - you continue to overwhelm us with both your generosity and your technical prowess! Second, thanks to all of you for your continued prayer, encouragement, and support - I honestly do not know what we would do without y'all acting as the hands of God.

- Eric

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Day 105 - September 28 - ...two steps back

Connor has begun doing some strange things, health-wise. First, he is having episodes when his blood pressure inexplicably drops for no apparent reason. His saturation level and heart rate remain where they are supposed to be, but he suddenly feels really heavy, turns ashen, and starts to pass out. This has happened three times in the last few days, and needless to say is a bit frightening for him (and us). Particularly since the doctors and nurses don't seem to have a handle on why it's happening. Additionally, he has begun to run a fever and the RT told us today that his lungs are getting "junky" again.

Please be praying for his health and the condition of his lungs. We really don't want to go back to having to fight pneumonia.

We should also be finding out the results of the MRSA cultures tomorrow - we need your prayer that the cultures will come back sufficiently clean that he can be released from isolation.

Another strange thing for the boy today was that he said his hands felt swollen. That's a new sensation, that might be signs of returning senses. Another prayer request...

One of the biggest battles the boy has right now is that he's having to fight his fear and anxiety. Anytime anything happens - alarms, or things like his BP changing, or anything unexpected, Connor almost panics. His heart rate goes up, he breaks out in a sweat, and he gets very nervous and uptight. Please be praying that he would be learning to rely on God and His provision. Pray that Connor would KNOW that God is good. Connor really needs to believe that God truly loves him.

Tomorrow (9/29) is "Y". God's own name - the only time in the Bible when He gives a name that says who He is rather than what He does - *Yahweh". Which translated into English, means "I AM".

He is. Whether we believe in HIm or not, He is. Whether we want Him to or not, He is. Go ahead and praise Him for being.

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Day 104 - September 27 - Abandoned and isolated

Connor hit a low spot today in his attitude, feeling abandoned and alone in this journey of his. He was feeling dejected and frustrated at the rehab he has to do, which he says just shows him how little he can do now. He told Cherié that now he's "nothing but a worthless POS".

Of course this is a lie from the pit, but Connor's use of the vulgarity indicates how strongly it hits him. I spent quite a bit of time tonight trying to show him the falsity of that idea, and having a very good friend spend time with him this afternoon also helped him greatly, so that he was on a more even keel by this evening.

All of us go through these moments or days of desperate agony, so we help each other work through it as best as we can. Please be praying for the boy, that God would speak to him, and that God would give Connor a glimpse of the things He is doing in the boy's life. He needs God's intervention badly.

It's already 12:30 AM, so I'm going to cut this short. Hopefully I'll get additional stuff out Sunday sometime. Sunday (9/28) is "X" - everybody ready? Connor and I talked a bit about it, and I've only got one "X" word that actually starts with "x" -

"XENOPHILE" - which means someone that likes people that are different. If there's thing to be said about God, it's that He loves all of us sinners (who are VERY different from Him) so much that He intervenes in our lives through His own son. If that isn't reason to praise Him, I don't know what is...

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Day 103 - September 26 - Praises and Prayers

We had a family conference with the team today, where we went over a bunch of stuff about Connor's surgery next week, plus insurance and other issues. First, we are still on for Wednesday October 1 for the boy's surgery. They are running cultures to make sure he's done with his MRSA infection right now, with the results coming back Monday. Please be in prayer about this - as I understand it, he HAS to be clear of the MRSA to do the surgery, plus if these cultures don't come back clear, then the Centers for Disease Control gets involved and the word is that the isolation issues then become very serious and long-lasting. So please pray that he will be released from concerns about MRSA.

The doctors also told us they are targeting October 16 as the day for Connor to come home. I'm not too sure how realistic that is, but that's what they tell us. We're scrambling to get a few things in order by then - some way into our house for him, upgraded electrical to support the many machines that will be coming with him, and some method of transportation that he can get into. Please be praying for us as we try to address these challenges.

For those who don't know, Cherié's father and a team of friends are in the planning stages of an addition for Connor on the side of our house. I'm sure you'll hear more as we move along, but as of right now we've got some very qualified people helping us figure that part of our puzzle out. Thanks, you guys!

An interesting thing happened this afternoon - we thought that Connor's ventilator was working incorrectly because it was breathing about twice as fast as it was set for. We were a bit nervous, particularly after Connor told us it had been happening alot over the last few days. Well, it turns out that the vent was working correctly, set at 10 breaths per minute, and Connor was self-initiating 19-20 breaths per minute on his own! It stopped after a while, but I liked the fact that Connor has begun initiating breaths again. We spoke with the RT and they're going to try to get the doctor to order another vital capacity test Monday. So I continue to pray that the surgery won't even be necessary.

Speaking of the surgery, I forgot to tell you that the insurance company finally gave their written agreement to pay for the operation! Ooh, look - another prayer answered!

Tomorrow (9/27/08) is "W". Connor and I kicked this one around a bit and couldn't really come up with a good one we liked. I finally settled on a word my Dad used to use back when we were kids and he was praying - watchcare. I tried to find a good definition of it, but I can't find it in a dictionary anywhere. Dad would be praying, and he would say something like "Father, thank You for Your watchcare over us". Maybe that's just a good ol' downhome Texas word, but I love the sound and the sense of the word - that the Lord not only watches over us, but that He cares deeply about us as well. All in one word. So we are going to be praising the Lord for his compassionate, comforting watchcare over us through this all, and every day.

We love y'all - hold fast.

Eric

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Day 102 - September 25 - Progress on two fronts

I am typing this in Connor's room to tell you of two things I think are significant. First, Connor's day went pretty well, and he is beginning to be able to use a computer now! It's still early days for him, as he learns the new techniques and practices with them, but I don't think it will be too long before he's posting up on his own. In the meantime, I'm typing the things he wants to say.

The other thing that I think is significant requires a bit of explanation. I mentioned that Connor is learning new techniques on the computer. One of them is to control a mouse with head movements, a difficult task as he tries to train muscles in fine movements that he's never asked of them before. Because of this, at the end of the day his neck is stiff and sore, which brings me back to the second thing. Tonight, Cherie was rubbing Connor's neck and shoulders to ease the tension. As she was rubbing his shoulders, she put a bit of muscle into it and Connor suddenly mouthed "OUCH!" After a bit of experimenting, we determined that Connor is now feeling pressure above his collarbones! Woohoo!

That is a new thing! He hasn't been able to feel anything below his chin for quite a while, so we are excited about this next new thing. And we renew our prayer efforts as we continue to lift up the boy. Pray with us!

Tomorrow (9/26/08) is "V". I'm gonna type just what Connor says about "V" -

V is for Victor. Jesus defeated Satan at the cross, and because of that we don't have to be afraid of him anymore. The Bible says that "greater is He who is in us than he who is in the world", and James 4:7 says to resist the devil and he will flee. So because Jesus is our Victor, He gives us power - power over the world, power over our sin, power over our enemy.

Thank you for giving up your precious time to pray and to check up on me.

Love, Connor

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Day 101 - September 24 - Midnight Oil

Briefly. Connor's bleeding from his trach has seemingly stopped, and the procedures to swap out his trach etc. went much better than he had expected, so there are two answers to prayer. I was particularly blessed tonight to spend some really good time with each of my kids in turn - first with Connor, watching movies, reading together, talking about the T-words and praying; then from 10:45 or so to midnight chatting with Joélle, which explains why I am burning the midnight oil to blog something up.

I wanted to take a second to say thanks to all you who posted today - your words were a particular encouragement to me. I'm glad somebody's ready for "X"! Extra points for all words that actually begin with "X" instead of just sounding like they do... 8-)

It warms my heart to hear of how people's perceptions of God are expanding through this - I honestly believe that God is so much more than I can imagine, and more capable even than I want Him to be. In fact, a god who isn't like that, in my mind at least, isn't a god at all. As far as I can tell from the scripture, God commands us to bring our requests to Him as our Father, and no father gets angry with his children for doing what he tells them to do. I never worry that God might get upset with me about that - He has every right to be angry with me for other reasons than what I ask for, and only His grace and the righteousness of Jesus avert that from me.

That's why I would not use words like "what I expect from God" or "what I deserve from God". I don't deserve or expect anything. God desires us to be in relationship with Him, not in a hierarchy. Hierarchies are where you find things like expectations - relationships transcend that into a sense of expectancy. What I mean is that if you have a friend, and that friend starts "expecting" you to act a certain way, or do (or not do) certain things, then your friendship is devolving into an institution rather than a relationship. Friends don't have expectations of each other - instead they expectantly look forward to being in each other's company; they have a sense of expectancy about the relationship.

I'm not explaining it well, but I believe God desires us to live in our relationship with Him, rather than fulfill a role built from His "expectations" of us and ours of Him. He is living and loves us - and as soon as we start institutionalizing our connection to Him, it ceases to be that relationship. So, when I go before my God with my request for 100% restoration, I do that because it's my heart's desire, and God wants me to do so. I don't do it because I expect Him to perform to my requirements (which would be pretty silly anyway).

I'll tell you how I see my boy in my mind's eye, right this minute - I see him walking up the walk to the door of his house, and stooping down to pick up his children and tossing them in the air while his wife looks on from the doorway. No, he doesn't (currently) have a wife or children - but I believe this will happen someday.

Am I crazy? I don't think so, although you would probably be better served to ask someone besides me! Do I have an unrealistic concept of God my Father? Again, I don't think so - He is able to do more than I can ask or even imagine. Am I demonstrating inordinate chutzpah by asking for Connor's complete restoration? No. I am boldly approaching the throne of grace as an heir of God and fellow heir with Christ. Will I accept less than a complete restoration for Connor? Yes, as soon as I perceive that God is telling me "No". Until then, or until Connor walks again, I'll keep asking.

Isn't that much more difficult than just saying "this must be Your will for us, Lord" and packing it up? Of course it is. But it's all I can find that's consistent with the Bible, and it's the only thing I can do to help my son. Would you give up?

Tomorrow, 9/25/08, is "U". We have two words for you tonight - Connor wants to praise God for being Unchanging, and I want to praise Him for being Unfathomable. If there is one thing I'm glad for right now, it is that God is the same yesterday, today and forever. And if there's one thing I know from firsthand experience about God, it's that we cannot figure Him out. He is both unchanging and unfathomable. Praise the Lord!

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Day 100 - September 23 - Twists and Turns

Our hundredth day was marked by frustration, pain, sadness, a little bit of laughter, and blood. Connor worked on a computer for the first time since June, trying to learn to intricacies of controlling a mouse cursor with head movements. It was very hard work, but he tried and did well. Hopefully it won't be too long before he's typing on this blog his ownself!

The RTs found blood in Connor's trach today, and they don't know where it's coming from. It's not "bleeding" kind of blood, just a bit, but it's still disconcerting - especially when the response it generates is "well, we'd better watch that". I'd say so!

Tomorrow Connor has to have minor procedures to replace his trach and his stomach tube. They are doing this because he's finished with his treatment for MRSA (again), and apparently artificial stuff in the body is an attractant for bacteria, so they're going to put clean ones in, hoping that we can clear the boy from the infection and get him out of isolation. They will do cultures on Thursday and Friday, so early next week we'll know if we can take of the gowns and gloves. I don't know if that will be good or bad - isolation translates into "single room", whereas he may end up in a room with as many as four patients once he's cleared.

Of course, he will be back upstairs in the trauma unit for his surgery next week, so be praying about that as well.

Tomorrow 9/24/08 will be "T". You realize we're almost done? I hope you all are thinking about "X" coming up - it's not too far away! Anyway, Connor's T-word is "Teacher". Pretty interesting choice for the boy, in my opinion. I can't wait to see the working of what he's being taught in this...

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Day 100 - September 23 - A Hundred Days?

I didn't realize it was the hundredth day until I started to post this, so I don't have any pithy words. Maybe later. I didn't post last night as I got home from the hospital at 11 PM, and 0430 comes early. I'm stealing a few minutes before I head out to work to drop a few words onto the screen to keep you all in touch - Connor had a good day yesterday, although his frustration continues to mount as he is surrounded by dozens of people working to strengthen various parts of their bodies while he remains unable to even feel his. I cannot comprehend what he must be feeling, but I know that I have to struggle not to be envious of people who can still move their shoulders. Please pray that Connor will maintain his faith and courage through this time. Pray that God will motivate him to work. Pray that he will rise to this challenge.

"S" today - my word is "shelter".

Have a good day. Thank you for your prayers.

Eric

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Day 98 - September 21 - One more praise

If y'all haven't checked out the world map in a while, go do it. Wow! For more detail, different sections of the world map can be clicked on and close-up views of that area are available. Recent additions I've noticed include (but are not limited to) such exotic locations as Sweden, Brazil, another spot in India, and North Dakota (finally!). WOW WOW WOW!

Thank you, Lord. In the immortal words of Forrest Gump, "That's all I have to say about that".

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Day 98 - September 21 - A good day

Today was a good change of pace for us. It started out (for Joélle, anyway) at 0345 when she got up to go to work (apparently Starbucks' opens at 0430 - what's THAT about?). Cherié and I were able to go to church for the early service, where we met some new friends and saw some old ones. Y'all don't know what a blessing it is to be wrapped in the arms of someone who cares. Words can't describe the difference between a hug in May 2008 and a hug in September 2008, but it's real.

When we got home from church, Joélle wanted to go hang with brother for a while by herself and have a movie day with him, so us old ones stayed home and took care of some of the myriad of tiny details that haven't been getting done, as well as just taking a few minutes outside of the hospital when we could be at home but not have to be asleep. Cherié and I got to the boy's room in the late afternoon to find the kids and a friend laughing and goofing off together, which was a good sight to behold. It cheers us so much to see them laugh together.

We are still trying to figure out the idiosyncrasies of the first floor, but we were a little more settled today. Of course, Sunday is the off day for rehab, so hopefully we'll be able to adjust tomorrow to whatever comes.

I want to take a second to tell you how much your comments and emails mean to all of us. We draw so much encouragement and support from them. I wanted especially to say "thank you" to Nancy for her concern about me and for her courage in posting her name, as well. I don't mention her by name to single her out, but rather to acknowledge her comments. They give me the tie-in I needed - I've received some interesting emails and comments lately, including Nancy's, and they are helping me lay the groundwork for Part 3 of my "Atrophied Faith" ramblings. For those who may not have seen them, Part One and Part Two of the series can be found by clicking on the links, and represent the struggles I am in as I endeavor to figure out what it means to pray for something in faith according to the scriptures (as opposed to how we believers currently try to do it) in the midst of our present situation.

Tomorrow, Monday 9/22/08, is "R". I asked Connor for a good "R" word, and tossed a few for him to think about. None of the good, solid, Christianese words I suggested rang his bell, and he mused over it for a bit. Then he got my attention and mouthed "Rock Solid". Now, because I'm part pessimist, part cynic, and part skeptic (and apparently ALL idiot), I asked him "Do you feel that or are you just saying that"? He locked eyes with me and said "He's Rock Solid".

That's good enough for me - our word for tomorrow is "Rock Solid".

By the way, the two of us had a very moving few moments right then while we praised Him for being Rock Solid in our tempestuous lives. Praise Him with your words!

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Day 97 - September 20 - Prayer and responses

Yesterday was a difficult day. The whole concept of moving from one part of the hospital to another is rife with anxiety, frustration, uncertainty, and fear. Not exactly the fruits of the Spirit, and so stress abounds - stress between family members, stress between us and the staff, stress at the situation - and eventually our circuit breakers trip and we say things we don't mean, or do things we regret, and all while the nonbelievers around us are watching. You can almost feel their heads shaking - "So, they're not any different from the rest of us".

And it's true - we aren't. The only thing that makes us act any different than anyone else in this situation is that God's strength is manifested in us when we are weak - we believe God has ordained this situation for His purposes, which are to ultimately bring Him glory and to conform us to the image of Christ. So we have a different viewpoint, or at least we try to. But when days like yesterday happen, we overload.

When I overload, my prayer life devolves into "Lord help us Lord help us Lord help us", over and over again. That's where I was yesterday evening, and so I grabbed my iPhone and fired up an electronic Bible I've been using, which has daily readings available. I clicked over to the daily reading for the day, which had two Old Testament passages and one from the New Testament - Luke 11. I pulled up Luke 11 and began to read:

Now Jesus was praying in a certain place, and when he finished, one of his disciples said to him, "Lord, teach us to pray, as John taught his disciples." And he said to them, "When you pray, say:

"Father, hallowed be your name. Your kingdom come. Give us each day our daily bread, and forgive us our sins, for we ourselves forgive everyone who is indebted to us. And lead us not into temptation."

And he said to them, "Which of you who has a friend will go to him at midnight and say to him, 'Friend, lend me three loaves, for a friend of mine has arrived on a journey, and I have nothing to set before him'; and he will answer from within, 'Do not bother me; the door is now shut, and my children are with me in bed. I cannot get up and give you anything'? I tell you, though he will not get up and give him anything because he is his friend, yet because of his impudence he will rise and give him whatever he needs. And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!"

This is not coincidental, although many will label it so. What this is called is providential - God brings the right words from His Word to the right ears at the right times. And so we continue to lift up our requests, knowing that God has not only NOT told us "no", but also keeps reminding us to ask. Father, restore my son, for Your glory. Amen.

Connor had a busy day with rehab for the first day. Please pray that he will adjust to the new routines and requirements, and that he will respond gracefully to the staff. There are a number of very bitter, unpleasant patients in this unit, and we desire to reflect Christ effectively here. Please pray for us to have the grace, faith, and love to do so to the other patients and staff around us. Pray that people will see Christ in Connor and in our family during our stay here.

Tomorrow, 9/21/08, is "Q". I've been waiting for weeks...

"Quintessential" - (adj.) Representing the perfect example of a class or quality.

Have fun finding another one!

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Day 96 - September 19 - 1st floor rehab

Connor spent much of his day visiting with us, watching movies between his physical therapy and his occupational therapy. This afternoon, we got word that the insurance company gave us a verbal approval, but when it came time for written approval there's now some hiccups. That sounds more like the insurance company I've come to know and love! The hospital caseworkers are working a number of angles to address this, and we figure that God will provide if we're supposed to do this. So we're not too worried about it.

The big news came a bit later, when we found out that we were moving downstairs to the rehab unit. We've now moved to a room on the first floor, still in isolation, and trying to adjust to the next reality. Connor is pretty nervous about this new environment, we are trying to get situated, so we're all a bit on edge.

Lord, we need You. We need Your intervention. We need Your provision.

That's our word for tomorrow, 9/20/08 - "provider".

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Day 95 - September 18 - Approved

We got the news today that our insurance company has approved the diaphragmatic pacer surgery, which comes as a bit of a surprise. I really thought they would have put up more of a fight. Now I have to try to figure out if it's a good thing or a bad thing!

The surgery is still scheduled for October 1, and everybody here is very excited about it. Personally, I really, really want Connor to breathe on his own without assistance. I pray to that effect constantly, and that God would confound the wise by causing the boy to begin breathing unassisted in the face of what the doctors think should happen. I would LOVE to have to call off the surgery because it's no longer necessary! So I think that October 1 means that I have 12 more days to pray that God would demonstrate His power by restoring Connor's breathing to him before the surgery.

Connor rested a lot today, even though he slept pretty well last night. Every time I checked on him through the night, he was asleep (except for the times the nurses woke him and the time I ran into the bed by accident). (Oops!).

I spent the afternoon with three contractors and an architect, wrestling with what our house should look like to bring the boy home. We hammered out some initial ideas, but we'll need to get the OT folks involved before we go much further.

Tomorrow, 9/19/08, is "O". Connor and I, after a bit of deliberation, settled on "Omnipotent", which of course means "All Powerful". Lord, we ask you to demonstrate it in us and in the boy.

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Day 94 - September 17 - Crash

It's time for more prayer. For some reason this evening, when Connor was turned onto his side his heart rate dropped to the mid-30s and he turned ashen. The nurses were there in a moment, and he was quickly stabilized, but there were about fifteen doctors, nurses, and various technicians clamoring around his room for thirty minutes or so. It was fairly exciting, with lots of speculation about vagal nerves, and barycardia, and glucose levels, and all sorts of very medical-sounding things.

After much rummaging around; after a stat X-ray that confirmed that his lungs are healthier than they were when we got here; and after a stat blood test that showed that his white count was 6.8K (remember that under 10 is good?), they have tentatively decided that the possible explanation might have been that one of his ventilator hoses may have come disconnected. While there may be a different cause, that seems to be the most likely explanation, since all of the checks they did afterward were all just the way they were supposed to be.

The event shook the boy up pretty badly, so I am spending the night in the hospital with him tonight, just to act as a sort of moral support, as it were. We would appreciate your prayers - first, that this might have been only an equipment problem and nothing more; that Connor would remain calm and trust God in this; and that his condition would continue to improve even more dramatically than it has thus far.

Tomorrow, 9/18/08, is "N" - how about "near". James 4:8 tells us to draw near to God, and He will draw near to us.

Move over - we're scrunching in.

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Day 93 - September 16 - Good news, bad news

As they say in the old jokes, I've got some good news and some bad news. But first I must acknowledge a couple of significant things. First, today marks three months - one entire season - since Connor ran into the water that afternoon. It doesn't seem possible. Second, on this date in 1810, the Mexican war for independence from Spain began. So there's the two significant events!

Now for the bad news first - after having MRSA in Fresno, then not finding it since we've been here in San Jose, then finally being cleared from the pseudamonas last week, and after two tests to confirm that the boy doesn't have MRSA, he has MRSA. Don't ask - I can't explain it either. Apparently, there are two things you absolutely cannot get in a hospital - rest, and healthy. OK, three things, if you count "good food". Anyway, now we have at least another week of protocols for treatment of MRSA before they will look at letting us out of isolation. Since we're in the process of waiting for a room in the rehab unit, that might not be all bad - if a single room came available first, we'd move into that because of the isolation.

The good news is that this afternoon, when I arrived at Connor's room, he showed me that he can lift his head off of the headrest in his wheelchair, and turn it side to side! When the OT saw this, she asked what level Connor's injury was, and we told her what we've been told - the injury is C4/C5, but it is acting like a C1. She shook her head and said "No C1 or C2 can do what he just did, and it would be "maybe" for a C3 injury". We queried her about this and she speculated that the doctor might be referring to pinprick sensation only when he said "C1", but she was pretty insistent that this was not consistent with the C1 designation.

We are thanking the Lord for this new development, and we believe this to be a sign of restoration in the boy.

I haven't actually seen them yet, so as far as I'm concerned it's just an unconfirmed rumor, but Granny and Gramps arrived last night from Washington. Granny is here to lend support while Gramps is helping figure out what the future of our house might look like. They will be in town for about two weeks this time, and boy, are we glad to see them!

Finally, tomorrow is "M". Now some of you have been skipping ahead, but that's not allowed! Connor gets first crack at the letter, and tonight he says M is for "Master".

Thanks for your continued faithfulness, prayer, and support. We love you all.

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Day 92 - September 15 - The latest

A very short post as the day winds down. First, thank you for your words in reply to my last post. Although they often bring scant comfort, they remind me whose I am.

I am back at work, where I find my stress level to be lower than when I am at the hospital. That puts me in the unusual category of going to an Air Traffic Control facility to relax. 8-0 It also lets me miss many of the new things that come up for Connor. Cherie and Joelle got to go with the boy this afternoon as he drove his own wheelchair for the first time. Like everything else he's ever attempted, Connor took to it like a fish to water. Hopefully I'll get to see it before too long.

The cultures have to wait 72 hours before the doctors make a determination about our isolation, so we won't find out anything about that until Wednesday PM at the earliest. Connor is, however, having more stuff in his lungs again, which raises the spectre of pneumonia once more. Right now it's only something to watch, but I would ask you to keep that in prayer, that he might be spared this additional burden.

Lastly, the boy has been tentatively scheduled for his pacer surgery on October 1. I am praying that God will irrefutably demonstrate that Connor doesn't need it prior to that date, and that he will be able to sustain his own breathing naturally before they do the surgery.

Tomorrow is "L". I've got nothing besides "Lord", which is how I see God already. I need a fresh perspective. Suggestions?

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Day 92 - September 15 - K is for King

I apologize for not posting anything yesterday. I wound my day up entrenched in envy and jealousy after meeting a young man yesterday afternoon. This young man came by in his wheelchair, without a trach and able to move his arms and control his fingers to some degree, and his injury was not only more severe than Connor's at the same level, but also happened a month after the boy's.

Connor looked on from his bed, craning his neck to see out the door. I couldn't help but draw the comparison between one young man, lacing obscenities through his speech without concern while blithely wheeling his chair up and down the corridors, and another young man, one who is striving desperately to believe that God cares about him at all, barely able to turn his head to see what was going on.

Now I go through the exercise of trying to find something - anything - that if I look at it just a certain way - looks a little bit like maybe there's a tiny, tiny speck of provision in it. And I ask myself, "If I have to do THAT, then who is really providing here?" If I have to turn my head a certain way to come up with something that looks like we're being taken care of, are we really being taken care of or am I just making this crap up?

I woke up this morning at my usual darkened hour, and asking myself how I should pray. I began by remembering Connor's K-word for the day - "King", and I tried to praise Him for being sovereign. I also tried to praise Him for Keeping us (that's my K-word). As I prayed, I was reminded of Philippians 4:8 -

"Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things."

And I was reminded of Romans 8:35-37 -

"Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,

"For your sake we are being killed all the day long;
we are regarded as sheep to be slaughtered."

No, in all these things we are more than conquerors through him who loved us."

And so another seemingly hopeless day moves forward, one in which we are supposed to somehow be more than conquerors. But I feel like I'm trying to build one of those cheap bicycles you buy at Walmart; the ones that you need an instruction manual just to interpret the instruction manual. I don't know how to do this anymore. I can't keep putting on the cheery face and pretend everything's alright. It's not.

I often tell Connor "Tomorrow might be the day." And I wonder if it's just wishful thinking on my part. Many of you are probably nodding your heads and thinking "Good, he's finally coming out of denial". But I'm not - I'm screaming as my confidence and faith are torn bodily from my soul. I frantically try to cling to them, but they slip through my fingers like sand.

How do I hold on?

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Day 91 - September 14 - Sacrifice

Oh, Connor.

It's Sunday morning. Sitting in my office, stuck at home with a nasty cold that I wouldn't wish on anybody, feeling miserable. It's raining outside. Six and 1/2 inches yesterday reminds me that I have to clean the gutters. Hurricane Ike effects are supposed to show up here this evening.

Reading the blog, catching up on all the comments through the night. I have a three hour head start over you west-coasters, but there is always a lot to get through.

Oh, Connor. How my heart aches for you.

There have been many times in my life when I felt I was dealt a crummy hand, but nothing compares to the cards you must play now. It took quite a few years, 51 to be exact, and many very painful lessons, which I imagine aren't done yet, before I began to recognize that when I protested the circumstances (a polite way of saying 'bitched and moaned'), I wasn't complaining about the circumstances so much as the God who designed them. Complaining about God, who in His infinite wisdom had crafted a set of circumstances that not only was designed to glorify Himself, but to produce the change in me that He desired, and further, to work together for the good of all those who loved Him and were called according to His purpose that would be touched by those circumstances.

How can you describe One who could pull that off? Master Craftsman doesn't begin to scratch the surface. And I was railing against Him, who was doing this for me. Oh boy. And over the years, (I'm a slow learner in these things) I slowly awakened to the fact that it was not my circumstances that had to change, but me, and how I perceived my circumstances.

Oh, Connor. How can I encourage you?

I am inadequate to the task. But I offer you this. Written about 13 years ago for an advent devotional at our church, it is a short story about sacrifice, about giving up one thing for the sake of another. A little snapshot of a very real moment in my tour of duty in the Navy.

My prayer this morning is that in it you would find encouragement, and maybe a little different perspective on your situation, that would give you a little peace for you here and now.

•••••••••••

This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. 1 John 4:9,10

Christmas – 400 feet down in the South China Sea

Black steel slid silently through the depths. Somewhere, somewhere else, it was Christmas. But here, in the cold and dark, it was combat. The red control room lighting didn’t reveal the intensity, but it was real, as real as the rising hackles of a suspicious guard dog.

Somewhere else it was Christmas. Our attack sub was rigged for ultra-quiet; no sound would be allowed to reveal our location. This intercept had been too hard won to betray ourselves with a dropped spoon in the galley, a hatch slammed closed, or…even a Christmas carol. Moving quietly through the boat, underlining the seriousness of our situation with quiet whispers, it was easy to notice the emptiness of our attempts at holiday cheer. The tinsel in the wardroom, a few battered ornaments in the crew’s mess, and a plastic tree that would have embarrassed Charlie Brown were a painful counterpoint to what wasn’t there. No traditional carols, no holiday music, no warm baking smells, no friends sipping cider, no family. There you had it. Something else sacrificed for the mission. This job was tough enough on a good day, but another Christmas away from family made it pretty easy to feel sorry for yourself.

A brief stop by Radio to check message traffic revealed a single strip of flimsy taped to the door:

From: Commander, Submarine Force, Pacific Fleet
On this day forty years ago every submarine in the Pacific Fleet was at sea, their crews fighting for their lives and those of their countrymen. Many of those who sacrificed that Christmas away from their family and loved ones made the supreme sacrifice and never returned from the sea. As you serve this Christmas with honor, reflect on the sacrifice of those who have gone before you, and take heart that your effort will not be forgotten by those whose peace you defend.

Back in my coffin–like bunk, I flipped on the light and pulled out my Bible. At least reading the Christmas story wouldn’t betray our mission. I read the prophecies in Isaiah and Micah, then moved into Luke, but as I read, my mind wandered. Something that SubPac had said, something about sacrifice. Through Luke once more, and then it started to sink in.

Sacrifice…to give up one thing for the sake of another. That the Christmas story was about sacrifice. That God would give up His Son for the sake of me, if only me. That God, through the sacrificial giving of His only Son, would not dwell on the loss, but see only what would be gained. That Jesus, who would grow up to sacrifice Himself, would not count what was lost, but only souls that would be redeemed.

What a lesson unfolded there, prowling silently in an alien world. A lesson about sacrifice, and the joy that comes from measuring sacrifice not in terms of loss, but in terms of gain.

I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me. Galatians 2:20

••••••••••

Connor, you alone must make this journey. God has not chosen us for it, and does not grant us the ability to do it on your behalf.

But you do not go alone. God has laid it on our hearts that all of us traveling with you will journey with you, and encourage you, and continually lift you up before God in prayer.

And that is a sacrifice that we willingly make.

Brad
Michigan

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Day 90 - September 13 - Ending our day

Connor and I spent the evening talking together, going over your "I" offerings. Thank you for helping us praise God in our storm. Cherié is still sick, but seems to be getting a little better with the medications.

Connor is really battling every negative emotion tonight. Please - I can't beg you enough - be lifting him up. I have no strength to look on him in such suffering, and I can't even begin to imagine how much more so it weighs on him. He needs your prayers so desperately.

Tomorrow is "J". I'm pretty sure it's cheating, because it's a name rather than an attribute, but we're going with "Jehovah Rapha" - the God who heals".

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Day 90 - September 13 - Peace and Frustration

Today marks 90 days since the accident at Hume Lake. 90 days of roller coaster ups and downs. 90 days of fear and terror, 90 days of despair, hope, depression, rage, and every emotion in between. 90 days of watching God work. 90 days of wondering if God exists. 90 days of growth, along with the requisite growing pains.

When I got to the hospital this afternoon, I walked in to the room to find Cherié holding Connor tightly as they wept inconsolably. Connor's anguish was palatable, filling the room with his grief. Please be praying for him, that he would have confidence in God's plan; that God would give him hope; and that the Lord would somehow assuage his grief.

They took cultures today to verify the status of all the superbugs. They will do it again tomorrow, and if both sets of cultures come back clean we're out of isolation. That would be a big blessing, albeit for us moreso than for the boy. Still, it would be good to be able to touch him with my skin instead of a glove again.

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Day 89 - September 12 - Not much new

Friday draws to a close without much in the way of change or momentum. Connor spent the morning going between physical therapy and playing possum whenever the nurses came in. Shortly after I arrived this morning, the doctor came in and we discussed the diaphragmatic pacer again, and Connor (with our agreement) gave his approval to proceed with preparations for the surgery. There are a number of hoops to be jumped through, not the least of which is getting approval from the insurance company for this brand-new procedure. Also, the doctor who pioneered the procedure has to come out from Ohio, and there's all sorts of scheduling stuff to be accomplished, so it will be a little while before the surgery actually takes place. Still, the ball is rolling.

That brings up another interesting aspect of this situation. Because this procedure is so new, if Connor gets this pacer he will be either the first person in California to get it, or maybe his surgery will be the first of its kind done in California; one or the other, or maybe even both. Either way, it's apparently quite a medical-community big deal. Because of this, we are apparently going to get to deal with the press about the surgery. While I'm not too excited to have to deal with such things, and I really don't want Connor to have to face that either, it does present interesting opportunities in terms of our visibility and God's hand in all of this. As we move through this whole thing, please be praying that all of us will be bold and reflect well upon our Lord in all our dealings, public or not.

Connor spent three hours in his wheelchair today, which included about an hour outside while he got his hair cut. He's back to his usual military buzz cut, and he tolerated being up in the chair for three hours very well. And yes, he wore his official yellow-gown anti-infection barrier!

Cherié went to our personal doctor this morning, and was put on a bunch of prescription meds to get her better. Please continue to pray for her health, and that she doesn't end up getting the boy sick from it too.

Tomorrow is "I".

"Immutable". It means "never-changing", as in "Jesus Christ is the same yesterday, today and forever".

Which means our God still does miracles today. I'm counting on it.

Good night.

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Day 88 - September 11 - Health Update

A few items - first, we've gotten what I think is the straight scoop about the superbugs. We were told today that Connor has been cleared from the pseudamonas, which is a good thing. We are also told that the mystery mention of the other superbug, which I think is called VRE, can't be located in the records after all. I don't know how that happens - mistake or miracle, I'll take it either way. So they have decided it isn't an issue after all. Finally, we were told today that they haven't found MRSA in Connor since he's been here, so once he ends his latest antibiotic run tomorrow, he will get a couple of tests to clear him from the MRSA, and we're hoping he will be out of isolation by Monday or Tuesday. There's a praise for you!

Someone mentioned that Connor was able to leave his room despite being in isolation, which must mean good things. Actually, they still take isolation precautions while he's outside - he has to wear a yellow gown. Don't ask.

Cherié's bronchitis/whatever is worse today, adding a sore throat and swollen glands to the mix. She is frustrated that she is sick just when she needs to be at her healthiest. Please continue to lift her up.

Cherié and I spoke at length with a fellow who received the diaphragm pacer five years ago. It was very informative and encouraging. Please be praying for us tonight and tomorrow, as Connor and we will be making our decision (most likely) tomorrow.

Speaking of tomorrow, it's "H". Connor gets to go first again -

God is our Healer.

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Day 88 - September 11 - Thanks, Fresno!

Brad beat me to the punch, so now I'm playing catch-up. We wanted to take a second to say "thanks" to the many, many people in Fresno who went to such great lengths to care for us while we were there. I know there is absolutely no way that I can remember every person and every thing that was done - if there's one constant thing in our life right now, it's how blurry everything gets after even just a few minutes. So I know I'm going to forget some people, and I ask your forgiveness if you end up being one of them. You can believe that your contributions to us during these times are not forgotten, even if a name slips my memory at the moment.

I'm just going to list everybody I can think of - no particular order. But each of these folks, or groups of folks, made a very big impact on our family in one way or another, and I wanted to publicly thank them:

Everybody involved in keeping Connor alive and getting him to the Emergency room.
Everybody involved in stabilizing him and successfully getting him through the ICU stage of his journey.
The entire A and B teams of ICU 5 South; not only for what you did for Connor, but also for what you did for us.
The staff of Step Down 1 on the tenth floor, for bearing with us and getting us through your part of the journey.
Maria and the other ladies working in the cafeteria, for smiling, praying and generally adopting us as honorary hospital employees.
Eastside Church of Clovis, for adopting us as your own and making us feel so welcome.
For everyone who gave us meals, gas money, snacks, and every sort of support imaginable.

Now some personal thanks to those who, somehow, made a special impact on us all:

Felicia, for bringing joy and smiles to all of us, and to Joélle in particular.
Marta, for doing the dance and making the boy smile.
Rachel, for your quiet grace and support.
Tonya, for your courage, support, tough love, 2-tone hair and Country-Western sponge baths.
Trey and Jenny, for getting Connor through the nights.
Les, King of RTs, for encouragement, hugs, quiet confidence and consistent support.
Chris, Prince of RTs, for competency, patience, and for caring enough to burn a CD of music for the boy.
Courtney, Empress of Speech, for...well, for everything. You're a sweetheart!.
Adam, for taking my son to see the sun, and for doing it on your own volition.
Kay, for chocolate brownie ice cream.
Jennifer, for being the cream of the new generation of nurses.
Bronwyn, for words of hope and encouragement.
Mike, for your passion, encouragement, and for reminding us not to let Satan steal our hope.
Sharkey and the Wild Bunch, for storming the throne of grace with us every Thursday, and for us the rest of the week.
Tod, for powerfully passionate faith, for hearing and obeying the Holy Spirit, and for being there when I needed you.
Laura and Don, for constancy, faithfulness, and your presence. And getting the oil changed. 8-)
Debbie and Diane, for faithful friendship and prayer.
Gary and Charlaine, for your home, your help, and for more than we can acknowledge.
Wade, Kristie and Scott, for walking (and rolling!) alongside of us.
Wade again, for knowing when to not say anything.

I know there are many, many more who deserve special mention. Please be content that if I didn't mention you, your name is going to be acknowledged by Someone far greater than I one of these days.

We love you all.

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Day 88 - September 11 - A Day of Remembering

Many of you today will wake to the grisly scenes played out seven years ago in New York, Washington and Pennsylvania being re-broadcast on all the news stations. Each of us were touched by the events of 2001, and none of us remains unchanged. Today is a day of remembering, and our hearts and prayers go out to those that still feel the pain of September 11th.

But not all remembering is painful and somber. Looking back over the last 88 days, there are many things worth remembering, because in those memories we see the attributes of God being lived out among us. Each of us at ConnorWatch, from Eric and Cherié, and Connor himself, to the thousands that travel with us by name and anonymously have been touched by the events of the last 88 days, and none of us remains unchanged.

I particularly want to call out one special memory, that of Laura Slagle of Fresno, whose role in ConnorWatch suddenly changed last week. Laura was the eyes, ears, and hands of ConnorWatch while the Williamsons were camped out at Community Regional Medical Center in Fresno. She selflessly volunteered for an oft thankless position to gather the background information we needed to assess how best to help the Williamsons while they spent 3 months away from home. She often made more than one trip a day to the hospital to see how we could help, staying in the background and letting the other visitors minister to Eric and his family.

All that changed last week when Connor moved to Valley, and the sudden release from her responsibilities must come as both a relief and a letdown. In all the excitement of moving to Valley, I wanted to make sure that she was remembered, since her day is now substantially changed.

Well done, Laura! Thank you. These words are an inadequate memorial to the work you did and the help you were. We will not forget that you were a part of this.

Of course, when saying thanks, there are many, many others who have been an important part of ConnorWatch and an inspiration to all of us. It would be ambitious of me to think that I could name them all without omitting someone special, so, for now, a general thank you has to do. But there a few that carry the lion's share of making ConnorWatch work.

Keep Mel, Kim, and Jenann in your prayers as they continue to carry on with the daily responsibilities of bringing Connor, Eric, and Cherié before you each day through ConnorWatch.

Brad

Michigan

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Day 87 - September 10 - A life lesson from ATC

Having worked in Air Traffic Control for 24 years, I've learned a few things about aviation. What I didn't recognize was how many life lessons you can learn from ATC. This morning, one of the controllers at work made the comment that they didn't know how I was dealing with all this and also coming back to an admittedly stressful job. I thought about it and recognized a significant parallel. When you're moving traffic at work, you don't get to unplug your headset and walk away just because it gets crazy and busy and stressful - you have to "belly up" (as we say in the trade) to the sector and make it work - hundreds of lives depend on your actions. So in those crazy moments, you grit your teeth and get the job done, even though you may also be very, very interested in having another controller come along to take over and give you a break.

We try really hard to keep controllers from working over two hours without a break.

It sure feels like I'm getting close to the two hour mark!

Of course, I can't count the times I've thought I'd been sitting at a position for at least two hours, wondering how long I was going to be tortured before I got a break, and it turned out I'd only been there for an hour or so. It just felt like it had been forever. There's a parallel for you - surely there's got to be relief coming soon?

Connor had an overall good day today - he spent about 30 minutes on the speaking valve in two sessions, something that is much more difficult on the current ventilator. Also, he spent three hours in his chair, and got to go back outside again for about 15 minutes, which felt good but also seemed to sadden him somewhat. He had five visitors today as well. They were spread out and it was good to see the folks who came by, and he wasn't exhausted by their visits because everybody was very gracious about limiting their time. Thank you all for coming by!

Speaking of coming by, it's pretty difficult to find us, so I'll give some general directions. First, don't park in the main lots - park around the back of the hospital in the lot directly in front of the Emergency Room. Walk up to the entrance but don't go into the ER - just keep walking straight into the entrance to the West Wing (there's a sign). When you go inside, follow the sign to the K elevators by turning right down the hallway. About 75 feet down the hall, the K elevators are on your right. Take one up to the second floor. As soon as you step out of the car, take two quick left turns and a right. There's a pair of double doors on your left called "Rehab Trauma Center" - we're inside in room 2K123. Easy, huh? 8-)

OK, we just read through all the "F"'s you all blessed us with. What a great way to spend a few minutes together focusing on our God and King. Tomorrow is G - this time Connor gets to go first...

He says "Good".

Wow, I'm impressed by this young man.

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Day 87 - September 10 - A quick prayer need

Briefly, Cherie has developed some sort of bronchial infection and/or cough. We would appreciate your prayers that she would quickly be rid of this thing, and that it would not spread to the rest of us - particularly Connor. Thank you for your help in this. She is devoted to being with her son, so you can imagine the challenge and the concern.

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Day 86 - September 9 - "F"

I'm not too sure what I should post tonight, so I'll be brief. Connor's doctors have found reference in his records from Fresno to some sort of really bad bacterial infection, apparently magnitudes worse than the MRSA and pseudamonas he has been treated for. There's mention of this bug, but no record of any treatment. We don't know of any other bug mentioned in Fresno, but the doctors won't take any chances and are running more cultures just for that thing. I don't know its name, but Cherié was told that if he does actually have it, he will not be removed from isolation for the duration of his stay at Valley. All his PT and OT would be done in his room and he would not be allowed out to interact with other patients or go to the PT gym, etc.. Needless to say, this is disconcerting - why would Fresno NOT have treated such a significant thing, but if he does not have it, why is it mentioned in his records? Also, if these tests were to come back positive, further isolation for the duration of his stay is something we aren't prepared to deal with. So our prayer in this regard is that he does not have this bug and no treatment for it will be necessary, and Connor will be able to get out of his room.

They put him on a different ventilator today, one that is portable so he will be able to get into a chair and leave his room in time. This vent works differently than the one he has been on, and he spent the afternoon and evening exhausted and lethargic. We are praying that he will grow used to this vent quickly so he can proceed with his OT - he was not able to do any therapy today because of this.

Work went well today for me, although it is taking a bit to get back into the swing of things. Thank you for your prayers in that regard. Now if I can just manage to face tomorrow...

We spent much time discussing the pacer and our options. Nothing was decided except some more questions to ask the doctor. We also determined that we often don't have as much patience and understanding as we wish we had. Please be praying for us, for wisdom and intelligence in our decision-making; for patience and understanding between family members; and for courage to trust God in our actions.

And please continue to lift up the boy. We pray constantly that God will hear your prayers and act.

Tomorrow (9/10) is "F" - I get to start...

"Faithful".

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Day 86 - September 9 - Telephone...

Remember that game you played when you were a child called "Telephone" or "Telegraph" or something of that ilk. We kids all sat in a circle and the starter whispered a phrase in a child's ear, who then whispered it to the child next to them, and so forth and so on, repeated around the circle, until it came back to the starter. The last child would speak the phrase out loud. Then the originator would speak the original phrase, and then we would all collapse into convulsive laughter as we realized how badly mauled the original phrase became in the translation.

"I like graham crackers and marshmallows" somehow became "My aunt has a blue pencil box and a large walrus" or something equally absurd.

Well, I'm a bit nervous about posting right now, because I'm caught in a small game of "Telephone".

Things happened today at Valley with Connor, Cherié calls Eric at work, Eric can't blog, so he calls me and tells me what the doctor told Cherié who told Eric who told me. See what I mean? I feel little or no possibility of getting this right, which is important, because we aren't playing a child's game here.

But Eric has asked me to communicate some concerns - here is the gist of it.

One - There is some confusion over Connor's medical record which indicates he may have an infection that no one was aware of outside of the staff in Fresno. It's a particularly nasty infection, that will complicate therapy and has the potential to isolate Connor as a result. Valley is testing Connor to see what the story really is.

Pray that Connor is infection free, and that the record discrepancies are eliminated.

Two - Connor has been in and out of it all day, perhaps a consequence of his portable respirator, and doesn't appear to be in any condition to pursue therapy, let alone benefit from it.

Pray that Connor is physically and mentally able to maximize his benefit from therapy, every day, but especially today.

Three - Cherié is on the front line here, having to deal with everything by herself while Eric has to return to work. These gyrations tend to exact a toll on her mental state, and cause both her and Eric to suffer.

Pray that Cherié would be strong and capable in dealing with changing events by herself.

These were Eric's concerns when he called me. Now needless to say, this isn't exactly what was communicated by Eric. Remember the "Telephone" game? I've had to act as filter and interpreter here so you aren't getting the raw data from Eric or Cherié. Which leaves me with a few prayer requests of my own.

Eric and Cherié seem to suffer greatly not being in control of Connor's situation. Pray that they would learn to trust God at His word, that He intends good for both them and Connor, and that it is God alone, not Cherié or Eric, that will determine the outcome for Connor.

Eric wrestles with his situational inability to be where he wants to be, with Cherié and Connor, to help take care of them. Pray that Eric is touched by the confidence that surrendering his wife and child to God puts them in truly good hands indeed, and truly gives him and us reason to "take no thought for the morrow..."

After 86 days of dealing with the ups and downs, and disappointments and pain, it is probably difficult not to be pessimistic, to hear only the bad in everything that is said, and to take alarm or offense at the slightest discouraging word, but this only leads to anxiety. Pray for Eric and Cherié, that they might be blessed to hear encouragement in the words that the doctors speak, and the situations that they encounter, confident that God is at work, here and now, and every day of the future, for His glory, that they would truly be "anxious for nothing..."

Finally, pray that Eric and Cherié hear these things from my heart in the spirit that they are intended, as a brother in Christ, a fellow traveler who has spent time in the slough of despair, and was rescued by the hand of God, who loves them and desires the best for them, and who can testify to the power of the one God who has rescued me from death.

And there you have it. Another carefully communicated message from the parents of Connor, that, Lord willing, will actually make sense.

Or maybe it was "a large pencil box and a blue walrus!"

Brad

Michigan

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Day 85 - September 8 - Praising

The other day, Connor and I started thinking of attributes of God that were worthy of praise. What we decided to do was think of them alphabetically, with one letter each day being the plan. The first day I had picked "awe-inspiring" (as opposed to "awesome"), and the next day we struggled to come up with "benevolent". Yesterday we praised Him for being constant, and for being our comfort, and caring, and for carrying us.

Short story long, this morning I woke up fighting despair again (0513), and I strove to come up with another attribute I could praise God for - one that started with "D", of course. As soon as I started thinking about it, I came up with "deliverer". I then tried and tried for another 20 minutes to think of any other attributes, but that's the only one that would come to my mind, so we've been praising God as our deliverer today.

The Bible says that God inhabits our praise. In the ESV, Psalm 22 says that He is "enthroned on the praises" of His people. I'm trying to learn to praise God for who He is, which is more constant than if I only praise Him for what He does. Cherié thought it would be fantastic if we could get everyone offering praises to God around the globe, all focusing on the same thing. She suggested that we put it out on the blog in order to get people all over the world praising God each day for who He is. I told her I liked the way she thought, so here we go -

Today was "D". Tomorrow will be "E". Y'all give us an attribute of God that begins with the letter "E". One each, no pushing. 8-) Then tomorrow we spend the day praising Him for the E's. Simple as that.

Go!

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Day 84 - September 7 - Scratches and Tingles

Another day down. One of the exciting moments of the day was when the air conditioning quit working and started smelling like electrical fire. Cherié and her famous nose noticed it first, and she soon had the nursing staff trooping in to let them know. Before too long, it was apparent in the whole wing, and over the course of an hour or so all the AC went out in the whole building! Of course this was in the heat of the day, too. They finally got whatever was wrong fixed, but not before the nurses had prepped every patient in the unit for evacuation if necessary. We're thankful we didn't have to roll the boy down the hall and outside!

We had a chance to go to our home church today for the first time since June, and it was the first time I got to actually get a glimpse of how many people are following our story (as opposed to how many post up). Wow, there's a lot of you! 8-) I got to put faces to some names I knew only through the blog, and we weren't able to make it through the morning with dry eyes. Thanks to all you West Hillians for your faithful support!

I think the bright point of the evening, however, was when we were sitting together after dinner. Connor began describing more sensations he was getting today - pain and pressure in what we used to refer to as "the nether regions"; tingling all over his lower back and right thigh, and a feeling he described as "what it feels like if you have some tight clothes on and they're moving against your skin" all around his chest, front and back. It is great to see that he's feeling these things. As of now, he is still unable to feel us touching him. We continue to pray for that to be fully restored.

Two more requests - that we would have a peace about the pacer discussion, and that I would be able to step back in to work effectively. I start back to work on Tuesday, and this time it looks like I'm pretty much done getting time off for this. It sounds right now that I've exhausted my options and will have to return to the control room, much as I question my ability to do so. Joshua 1:9 again, right?

It's late, I'm exhausted, and I'm falling asleep at the computer. Good night, y'all.

God is good, all the time.

Eric

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Day 84 - September 7 - Visitors

We've determined that Connor is ready for visitors again. He's settled enough here, and things are stable enough, that we're ready for his friends to come by. He is currently in the Rehab Trauma Center on the second floor, although he should hopefully be moving down to the Rehab Center tomorrow or the next day.

This place is a bit different from Fresno - because they are working with him regularly, he has a schedule for PT and OT, and it's a bit different every day. I don't know if that will be the case in the Rehab Center, but here in the RTC it's fairly hit-or-miss. Sunday is the only day of the week that they don't do therapy. Because of that, predicting a good visiting time is difficult. Some general guidelines - early mornings and after dinner don't work, so please don't plan on visiting at these times without coordinating directly with us first. Also, please don't plan "all-day" visits; he has to take naps during the day due to how tiring his therapy can be, so please be considerate for him. Finally, I know I don't have to say this but please be thoughtful of his health - if you have a cold or flu or something, please help him stay healthy by waiting until your symptoms are gone. Also, the facility has a pretty strict limit of two visitors at a time. Please plan accordingly!

We are so thankful for all of you, and for how you continue to lift Connor and our family up daily in prayer. We are glad to be closer to home and closer to our hometown family. We've learned, however, that "home" really is not a building or a place, but rather it is primarily in the presence of your children and family. It's an odd feeling, being in your own house but not being "at home". We can't wait to be all together in our house again.

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Day 83 - September 6 - Why Me?

Why'd you have to give me such lovable doofuses (doofii?) for brothers, Lord?

You realize that this means war? No self-respecting male should have his incredible reputation for overwhelming masculinity called into question by the global posting of photos taken in his early geek years! Now I'm going to have to start a new blog dedicated to all the horn-rimmed, long-haired freakazoid pictures I have of my to male siblings.

In the meantime, here's a praise for you - this morning I got to the hospital to find that overnight, the staff has dialed Connor's vent settings down to room air - 21% O2 - with a PEEP of zero! And he's maintaining his saturation levels in the high 90s and also instigating more breaths than the vent is set for! Woohoo - we'll take that!

Just to refresh the vent weaning debate, the doctor's concern is that the amount of breath Connor draws - something called the "vital capacity" or VC, is very small compared to what he needs. They say he needs to draw over a liter of air to sustain it, and he's currently drawing between 100 and 200 milliliters. Not enough. Of course, you may remember that he used to be drawing 50-100, so that's a discussion I will be having with the doctor next week. For now, I'm just enjoying the fact that the boy's on room air and doing well.

God is still good.

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DAY 83 - September 6 - Happy Anniversary!

Kent here.... I just got a phone call from the oldest of the Brothers Williamson, Brad, who reminded me that it was 23 years ago today that Eric and Cherié were married! This photo that Brad donated for the cause was taken on a camping trip not long after the wedding.

The ceremony took place in Oregon. My sister Melissa (with her newborn baby) and I flew from Chicago to be a part of it all. It is amazing how quickly the time goes.

As you know, weddings are beautiful things where two people pledge their love to one another before God and man. There are vows that often include phrases like "for better or for worse". Twenty-three years ago Eric & Cherié had no idea where life would take them. On June 15th of this year, they had no idea what the 16th would bring.

We are now eighty-three days into this new chapter of the journey. So on this day, Twenty-Three years from the day they said "I do" to each other, I raise a toast!

Here's to Eric & Cherié! A strong couple whose love has been forged through thick and thin... through the good and the bad... A couple whom I'm proud to know!

Love you guys!

Kent

P.S. It wouldn't be like me not to throw in a touch of humor into such a fine post, so here's another shot of Eric from that era...

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Day 82 - September 5 - Clothing and chairs

Today had a couple more firsts in it for Connor. Today he was completely free from hospital gowns! It was encouraging to see him looking more himself. Also, the OTs spent quite a while fitting him for an electric wheelchair, which (once he can handle a portable ventilator) will set him free from his room.

He spent two hours sitting in the chair this afternoon - they haven't gotten everything set up on the chair yet, and they haven't hooked up his controls so he can drive the thing alone - they'll be doing that soon. Once they get all the measurements and settings correct, he will be taking that thing everywhere.

This one is just a loaner from the hospital, another step in the process. He has mixed emotions about the chair, which I can understand. I remind him that doing these things does not mean we have given up on God's healing - it just means he'll have more things to occupy his time while we wait. Still, this is a hard thing for an active 18-year-old to have to take. Pray for his spirits.

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Day 82 - September 5 - Another move coming?

We spoke with the doctor today, and he seems to think Connor will be moving downstairs to the rehab unit this weekend. So yet another move looms. We haven't really gotten used to "here" yet, but soon there will be more newness to come.

We also have to decide whether we want to pursue surgical options to get the boy off the ventilator. Please be praying for us this weekend as we debate the possibilities, options, and how it meshes with our faith. We like our doctor, but we also respectfully disagree that the boy can't be weaned. This raises all sorts of frustrations with the idea of a diaphragmatic pacer, so we desperately desire your prayers.

Connor continues to get different sensations below his injury - we pray for the boy's restoration. Keep praying!

Also, thank you for all your offers of help with the house issues. The doctor told us today not to actually build anything until the therapists can help. So we're going to kind of tread water, house-wise, until we can figure out what needs to be done. We'll be sure to let everyone know as things progress.

Speaking of the doctor, we are pleased that he has decided to keep the boy as a patient even after Connor moves downstairs. This doesn't sound like his regular practice, so it pleases us that he has connected with Connor and the family in this way. Like I said, we like him.

Health-wise, Connor's heart has not done the dipsy-doodle last night or today at all. The tests from yesterday came back with no problems - his heart is healthy and strong; apparently it also beats slowly on occasion. I know I don't really need to keep saying this, but please keep praying.

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Day 81 - September 4 - Anybody want to help?

About five days ago or so, I woke up with the thought that there was some TV show where they rebuilt the homes of people who needed it. I asked Cherié, and she told me about "Extreme Makeover: Home Edition". We kicked the idea around about applying, and downloaded the application. That afternoon, a dear friend showed up unexpectedly, and when Cherié mentioned it to her, she said she had the same thought and had downloaded the application as well! Since then, completely without any prompting, I've gotten several people on the blog suggesting the same thing. I've also had numerous offers of help of one sort or another to get our house ready for the boy, but it keeps sticking in my head that we should give the TV show a chance to pay for all this. So, I took another look at the application, and they want to know how many feet there are between my house and the neighbors, how wide the streets are, and all sorts of stuff like that. They also want a recent video of the family, somewhat problematic as I don't even own a video camera.

After looking at the application, looking at my normal procrastinating idiom, and looking at my current level of mental acuity, I have decided that this is an area where someone could help. It is acceptable in the application process for someone to apply for someone else, so I'm hoping someone will step forward and do this application thing for us. We can manage to arrange for video or still photos, we just need someone to actually do all the work and send in the application.

My brother Kent has volunteered to edit any video footage into a decent presentation. I'd get him to shoot it too, but he's in Virginia.

I have no idea how long we have before we bring the boy home. I have no idea what kind of lead time the show needs. I have no idea if they'd even be interested, but I figure if God wants to use them in this, the least I can do is apply, right? If it's to happen, however, I'd like to get it done as soon as we could.

If you think you'd like to take a crack at this, obtaining photos and videos, measuring stuff and putting together an application for us, please get in contact with our support staff through our contact page or by clicking here.

Let's see if God would open this door...

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Day 81 - September 4 - Server Outage!

As agent Maxwell Smart used to say, "Sorry about that, Chief!"

My apologies for your inability to connect with ConnorWatch for the last few hours. We have been experiencing serious difficulties with our servers out at the ol' server farm - not ConnorWatch related, but affecting the server that drives ConnorWatch and six of our other sites. Providentially, we have a crack team of technicians on the problem, and ConnorWatch actually came back on line while I was on the phone with them trying to get a status report.

The bad news - we may intermittently lose access to ConnorWatch as we wait to confirm that the problem has been corrected. We think it is fixed, but you don't know until you know.

Be patient - there's a lesson in here somewhere for us. If you see ConnorWatch down, don't be afraid to send an email to admin (at) connorwatch.org and see if you can catch me sleeping.

Brad

Michigan

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Day 81 - September 4 - Update

Our first 24 hours at Valley have been good, although the new routines, regulations, techniques and people all take adjusting to. First, the ventilator routine here is substantially different from Fresno, but Connor is doing well with the new settings and the vent is providing him with the breath he needs. The physical therapy (PT) and occupational therapy (OT) teams leapt into the fray with both feet - the PT folks were up yesterday morning doing work with him when Cherie got there, and the OT team had him in a wheelchair for two hours yesterday afternoon.

Today has brought some new challenges apart from the "get used to Valley" stuff. First, Connor's heart rate has begun dropping for no apparent reason. His blood pressure, saturation and everything remain normal, but his heart rate has fallen. It seems to be settling in the mid-40s, but has intermittently fallen as low as 25. They first thought it might be autonomic dysreflexia (when your autonomic system goes bonkers), but none of those signs are there. So they are watching it. I've encouraged them to investigate the medications he's on, as they've changed some of them since he got here.

The other challenge I seem to be facing is that I seem to be genetically unable to communicate effectively with anyone. I can't open my mouth without irritating, offending, upsetting, or otherwise chapping someone off.

Thanks for your prayers, your support, and your offers of help. They are NOT taken for granted.

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Day 80 - September 3 - Praise the Lord

I've just written and thrown away two different blogs, both of which summed up my total despair at the latest news. As I wrote the second one (which was only slightly less offensive than the first one), I finally was able to pray about it and about what I was supposed to post. The only answer is that I'm supposed to praise God for what He is doing.

I suspect you'll be able to read sarcasm into these words if you want - I do not mean them that way; I just have to type this like this -

Praise the Lord for getting us to Valley safely.
Praise the Lord for keeping Connor healthy while he traveled.
Praise the Lord for giving him the right staff in the ambulance.
Praise the Lord for getting all the vehicles and RV back to the house without any problems.
Praise the Lord for having qualified medical people here to help keep Connor healthy.
Praise the Lord that Connor's injury has been assessed as C1 instead of C4/C5.
Praise the Lord that this means Connor has no feeling except on his face.
Praise the Lord that the doctors believe Connor cannot be weaned from the ventilator.
Praise the Lord that we may now have only a few weeks before we have to have a way to provide for Connor at home.
Praise the Lord that our house has no provision for handicapped or ventilator-dependent people.
Praise the Lord that you can't even get a wheeled chair or bed into our house.
Praise the Lord that the housing market has fallen such that I have little or no equity in my home to pay for renovations.
Praise the Lord that there is not enough time to design, finance, and build/modify the house before our time will run out.
Praise the Lord that there isn't even enough time to hack through the bureaucratic red tape before our time will run out.
Praise the Lord that He has placed so many insurmountable obstacles in our path that there is no human way to provide for my family.
Praise the Lord that He has brought me to a place in my faith where He must be faithful or we are destroyed.

Honestly, I find no sarcasm in me when I write this. I'm not jumping up and down waving my arms, but I'm not sarcastic either. Everything rides on Him, and we try to cling to our faith that He will intervene.

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Day 79 - September 2 - Prayer for Eric

This is Brad - I've jumped into Kent's post since I was the first one back to a computer - this is hard to do from an iPhone.

I just got off the phone with Kent. Eric has called requesting prayer for himself and Connor's situation. He is in the midst of real struggles.

As Connor settled in at Valley, issues (of which I do not know the details), evolved that have Eric wrestling with God.

This is a difficult time for Eric and Cherié, completely the opposite from what those of us watching from the outside anticipated. How can you best pray? I wish I had a good answer. I don't know the future. God hasn't granted me any special revelation. And I don't think I have much wisdom to offer in this situation.

I talked it through with Kent a short while ago, wrestling with how we can best help Eric and his family, and this is the best I've got. Nothing more than a sense of the situation, a gut feeling, if you will, an inkling, perhaps, but it's all I've got for you to go on.

Pray for Eric, Cherié, and Connor.

Pray that they would be able to surrender what they think is best, and seek what God would have them accept for the future.

Pray that they would trust God to provide, even when the outcome is different from what they would think they want.

Pray that they would see the hand of God working to sustain Connor and prepare him for the future, not as working against their desires.

Pray that they are still talking to me after this post.

Brad

Michigan

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Day 79 - September 2 - Connor Moving To Valley!

Eric just called (15:15 EDT) and said he was running to the car to catch up with the ambulance moving Connor to Valley. 'The Boy' is on his way!

Everybody is a little frantic as all this happens, not the least Connor, who Eric reports as very nervous anticipating being in an ambulance on the road, completely dependent on the skill of the attendants and the electrical system of the ambulance to keep him alive, while he can do nothing.

Sounds a lot like our own situation before God, as Eric acknowledged, though we rarely think about it that way.

Take a moment if you can, and pray for a safe transfer for Connor, that he would be comforted in this challenge, and that he would find God real and present, and for the rest of the Williamson's racing along behind the ambulance in their own car, as they must trust and surrender as well.

Brad
Michigan

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Day 78 - September 1 - More than conquerors

I've been living for the last two months on the principle that God provides enough to carry us through the day, referencing God's daily provision of manna as an example. I guess I should have gone and read Exodus 16 earlier. I was reading Romans 8:35-37 today, and I looked at it in a different way than normal. Normally, we refer to these verses in light of salvation, but they are really talking about the love of God. And they say an interesting thing - that in these situations, we are more than conquerors through Him who loves us. Wait a minute - MORE than conquerors? If that's true, then why am I trudging along like a starving victim of fate through my day? So I actually went and read the story about manna, and I learned that while I knew the story, I didn't KNOW the story. Seems that Moses actually tells the folks to go get as much manna as they want. Some gathered a lot, some just a little. But then they measured it, and the ones who gathered a lot didn't have any left over, and the ones who gathered a little had enough. Hmmm. That would mean that you could gather as much manna each day as you wanted, and that would be the right amount to see you through that day.

Now, remember that the God who provided the manna is the same one who loves us in Romans 8. And if the One who loves us says "gather as much as you want" and makes us more than conquerors over such things as tribulation and distress, why am I content to trudge? Trudging is not a method of transportation that befits a conqueror (much less someone who is MORE than a conqueror). So in the words of my teenagers, what up with that?

I'm not sure yet exactly how to go about being more than a conqueror by availing myself of more of God's provision, but just knowing it is possible means I'm gonna go find out. The story of the manna is true - however much I gather, that will see me through the day. But if I gather more, that would put me closer to the "I don't trudge anymore" category, right?

This evening Connor had, and gave us, a bit of a scare. We were visiting with some friends in the waiting room, but our visit was cut short abruptly by his nurse coming into the room looking for Connor's parents. We bolted up to see what was wrong, and she said that he wanted us. When we went into the room, we found that a lady a few doors down had passed away about 15 minutes after telling her son "OK, I'll see you tomorrow". This distressing situation and the resultant chaos promptly drove Connor's anxiety level through the roof and he wanted us near him. We came alongside him and comforted him, but it was a nerve-wracking moment for this son of ours.

He remains anxious about tomorrow and what the next days and weeks will bring, but is struggling to rely on God's provision. He also is wrestling with the changes in his medications, which continues to stress him and prevent him from resting.

Please be praying for him regarding tomorrow. They did the blood tests today and it appears we're "go" for launch, so we're trying to wrap up our Fresno life and get ready to move. Many new stressors on top of those we carry daily.

One thing about the move - once we get to Valley, they tell us to expect two to three days of intense activity as they get him settled in. I would ask that those who want to visit him wait until I let you know through the blog when things have settled down. We don't yet know what his days are going to look like, but I'm sure the first few are going to be exceedingly stressful for him. We are all eager for him to see his friends again, but please help us by exercising your patience a few more days!

We love you all. Thank you for your continued prayer and support.

Eric

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Day 78 - September 1 - More

More prayer requests for Connor regarding the move. First, the folks at Valley have different protocols than they do in Fresno. What this means is that they have different ways of thinking about medications, equipment, and techniques. We already know that when Connor gets there, one of the first things they do is evaluate his meds and take away stuff they deem unnecessary. We're good with getting rid of any meds we can, but we also know that there are other issues with changing his medications in this situation, many of which involve him having to adjust to changes or to doing without. That equals more stress on top of the move. Additionally, the medicos at Valley have told us that his first 48 hours will be a whirlwind of activity while the whole team leaps into action to measure, evaluate, test, poke, and prod to determine his status. So far he hasn't really responded all that well to whirlwinds of activity. Pray for his strength, patience and endurance during this time. Pray that he, and we, reflect well upon our Lord as the staff of the facility looks at us closely.

Second, I found that of the swarm of medications the boy is on, at least three of them react with each other to suppress either respiratory function or the function of the central nervous system. Pray that Valley will recognize this and come up with alternatives which don't have these effects.

Third, he has developed a slight fever today, which we think may have been caused by his IV infiltrating and going bad. It's better if that's what caused it, because the fever should abate quickly now that they've taken the IV out. The concern here is that Valley won't take patients with fevers. So, another prayer request. An additional concern is that they've decided to not put another IV in. This is good, but it also means that now Connor gets medications via mouth or his PEG tube, both of which are not as quick to act. Not a huge issue, but one that effects the boy directly and so has a great impact on his mental state.

FInally, there was a word posted on the Guestbook page that moved me so that I wanted to share it with you. It was the words to a famous old hymn, and these two ladies presented it to us in such a way that I sang along with the words as the melody rang in my head, and it ministered to me. Here's a partial quote:

As I just read your blog, the song "Day by Day" came to mind. Sing it with me:

Day by day and with each passing moment. Strength I find to meet my trials here.
Trusting in my Father's wise bestowment, I've no cause for worry or for fear.
He whose heart is kind beyond all measure, gives unto each day what He deems best.
Lovingly, it's part of pain or pleasure, Mingling toil with peace and rest.

Help me Lord when toil and trouble meeting, E'er to take as from the Father's hand.
One by one, the days, the moments fleeting, "Til I reach the promised land."

Thanks, ladies.

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Day 78 - September 1 - Trudging

Woke up this morning in the same place we wake up every day. Already exhausted, hopeless, fighting to keep true to our beliefs against the deadening pain of this continued existence. It's like "Groundhog Day" without the optimism.

Please be praying that God would provide for Connor and go before him in the move tomorrow - that He would bring the right personnel to the ambulance ride; that the boy would tolerate the ride well without health problems; that God would be placing the right doctors, nurses, and patients there to provide for Connor's best situation; that God would place believers around the boy in the right places to be able to minister to him at the right times.

Today I feel perilously close to giving up. We are trying to be strong and courageous, but it's difficult to do so when all I can feel is how badly we are being defeated by our circumstances. Cherie commented this morning about how we aren't where we can see new mercies every morning - from here it's the same every morning, and there's not much mercy to be found. We read the Word, we pray, then we break camp and trudge off into the desert again. Are we there yet?

Blessings out of the move? Closer to friends. With our daughter. No RV rent. Our own bed.

Prayer requests? We don't have the first clue how to start preparing our home for Connor's return. I'm sure there are massive changes that have to be made - don't know what, don't know how, don't know how to pay for it. Don't know how to resolve all the issues surrounding trying to live in a 2-story house. We don't even have any idea how to arrange a workable schedule for the family.

Gotta get the day moving. Pray for us.

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