Wednesday, August 06, 2003

Yesterday was hell. And I didn't even run.

Long day at work and Julie had her first, of many I'm sure, battles with the insurance company. We received a wonderful bill from the hospital of which we'll be expected to pay 80%. But most importantly, we received Jacob's Vest.

The Vest is this remarkable device that CF patients use for their PT (Percussive Treatments). It plugs in to the wall and then uses air pressure to pound on the person's chest and back. As the name indicates, it slips over their head like a vest.

We learned last week that Jake would be receiving it. That news was kind of... strange. And when we had it in our homes... well, it was another one of those moments inwhich I felt overwhelmed by the weight of this disease.

You see, it's like you have these moments when you kind of forget that there's anything wrong with your child. At least, I have those moments. Generally it happens during family events when I'm watching Jake play with the other kids. He seems so.... normal. And then, as if just thinking he's "normal", a shot rings out and I say to myself "but he's not normal. He has CF."

At home, it's easier to place the CF in the back of my mind. We've adapted to the disease; his meds and breathing treatments have become part of our daily life. So the arrival of this new machine into our home might as well as been a boulder falling through the roof.

"Hey, look what just dropped in."

It's kind of like Pacino in "Godfather 3"... "Just when I think I'm getting out, something always pulls me back in". Just when you think you have a handle on this f'n disease and taking back the reigns, something new drops in.


We're making good progress. We've broken the $1K mark and some of the heavy guns haven't even weighed in yet. I'm feeling really confident about reaching my goal.

Today I ran four miles in forty minutes using the run/walk method. I pushed myself a little harder today and it felt great, though, I have a long way to go if I think I can run at that pace for 26 miles.

Forgot my MP3 player at work again, so tomorrow I'm stuck with the same songs. My God, if I have to hear Pete Yorn's "Murray" one more time I may vomit (for those of you who don't own Yorn's debut album "musicforthemorningafter", go get it).

Today has been a better day. This script I'm working on is killing me, though. Not getting enough sleep. Springsteen is less than 2 weeks away and I love that Jayhawks album. Take care.


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