Day 435 - August 24 - Tough Haul

OK, this is a pretty stupid word picture, but it just popped into my head and it's helping me deal with the current situation, so you'll just have to bear with me...

There's a TV show out there that I've watched a bit lately called "Ice Road Truckers". I'm usually somewhat disdainful of reality TV - it seems like just a way for TV producers to get shows out there without actually having to produce anything - stick a camera in some poor slob's face, fire off a few hours of footage, then slap it together and broadcast it - no script, no soundtrack, nothing. Sort of a shortcut to dollars without actually producing anything. But, since we spend a lot of time in front of the TV these days, eventually we were bound to run out of good things to watch and have to start with things that have less value. Anyway, I was watching this show, which follows a group of people who drive trucks on the road that supplies the Alaskan pipeline. Now get this - they pave this road with ice (hence the name of the show), so these truck drivers spend all their time trying to not crash as they zamboni their way between Fairbanks and Prudhoe Bay. It turns out to be at least fairly interesting, after all! So they drive these semi trucks up and down mountains, around all sorts of nasty, slippery turns, and all on ice. So there's one part of the road that has this really long climb up a pass, and the trick is to go exactly the right speed in exactly the right gear in order to make it over the top. If you go too fast you'll slide off the edge and go crashing down into the canyon below, but if you go too slow you'll lose momentum and stop, and you won't be able to get started again because your tires will slip with too much power going to them. It's really odd because they start the climb barreling along at speeds that you and I would find insane on an ice road - maybe 50 mph or so - but by the time they get close to the top, they're only going maybe 3-5 mph. They're crawling along so slowly that from a distance you can't see them move.

So yesterday, Cherié and I were sitting in the backyard with tears in our eyes as we tried to come to grips with the latest manifestation of our situation. Connor has been having more and more difficulty staying saturated with oxygen, and yet his lungs sound and seem clear - he should be saturating well, but he's not. In addition to the fact that we're having to put him on oxygen at night again, his low sats make him feel lethargic and punky, and he has difficulty remaining in good spirits. And there doesn't seem to be anything we can do for him. We've got an appointment with the pulmonologist in a few weeks, but until then we're just trying to get by and manage the situation.

It certainly feels like we're not going anywhere. And so Cherié wept as we sat on the patio, as I watched, helpless to do anything to make anything better. We talked about the progress all the other kids that we know in Connor's situation are making - standing frames, and arm movement, and... well, we'd just about kill to see something new in Connor right now. But there's nothing. Connor is just about the same as he was 15 months ago; we can't even practice weaning him from the ventilator, because he doesn't stay saturated even while he's on it, much less off of it.

But we do know there's a reason for this. And apparently, this slow pace is precisely the speed we need to be traveling in order to make it over the top of this long haul. Maybe if we were moving faster, the desired result wouldn't be achieved. It feels like if we moved any slower, we'd be going backwards. But we have faith that this is the right pace, and place, for Connor and for us. That seems impossible - how can this be good? - but we believe it to be so.

Please continue to pray - for renewed health and progress for Connor; for renewed faith and resolve for all of us.

Thanks. We love y'all.

E.

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