Thursday, December 22, 2011

The Hero Returns

Jacob is back from the hospital now, after having his Cystic Fibrosis cleanout.  It ended up not being quite a full two weeks this time, which was nice.

Jake is growing up.  He’s a few days under 12, now.  During this hospital stay, he started to noticeably engage more in the talk with the staff.  In the recent past, he’s been involved in some opportunities to speak to the nurses, particularly the student nurses, and teach them how to better deal with children patients.  He told them all to talk more directly to him, as the patient, instead of just talking about him with the parents, while he’s in the room.  

I think that, this time around, that this experience has given him a lot more confidence in dealing with the nurses, the techs, and even with the doctors.

For example, when the Cystic Fibrosis pulmonologist was in, and they were talking about just how long to keep him in, he piped up and said that he wanted to do as much of the full cleanout as necessary, because he “didn’t want to have to come back in a few months!”  The decision was made.

A couple of days later, talking with the same doctors, they said he was well, and sounding clear in his lungs, and they asked him if he felt he could go home.  He was excited and said that he definitely wanted to.  They were including him in the decision making process.

He’s a sharp kid.

Saturday, December 17, 2011

“To the Genius of Ayn Rand”

As a young high school kid, trying to learn to play the guitar, I remember reading those words on the back of a Rush album, 2112.  I loved the album, but at the time, I didn’t fully understand the sentiment.

Years later, as a young musical entrepreneur, I finally got a copy of “Atlas Shrugged”, and read it.  I found parts of it very inspiring.  The parts, in particular, that talked about diligence, hard work, vision, and self-reliance.

There were parts of the book that didn’t ring true.  Like the notion that people would sit, transfixed by their radios, as a man droned on for literally hours (chapters) about ecomonic theory.  In this day and age?  No way:  “Who the %$^* is John Galt?  Dude, what channel is ‘Jersey Shore’ on?”

Fast forward may years, and Ayn Rand has become a political figure again, galvanizing the new right right wing.  Meanwhile, I’ve become a father of a boy with multiple medical issues, Cystic Fibrosis and Cerebral Palsy among them.  I’m learning that when dealing with such issues, self-reliance simply isn’t an option.  The costs are too astronomical.

Then, today, I read that the poster-girl for the new libertarian right actually accepted Social Security and Medicaid (read here and here), my first reaction was a cynical, “Ha!  See?  It gets to us all eventually!” I read the articles, and many of the vicious comments.  She was slammed as a hypocrite, and as a phony.  Others defended their idol, claiming that because she paid into these systems by force, she was entitled to draw from them as well.

I felt saddened, more than anything.  Ayn Rand was a genius in her own way, in that she formed her ideas and shared them in a way that impacted the world.  I disagree with her vision, but I do admire her nonetheless.  At the end, I saw a picture of a woman who was confronted with the choice between practical reality and her ideals.  In “Atlas Shrugged” she was able to create her own world, a utopia where her theories worked perfectly.  But here in the real world, it doesn’t always happen that way.

Time at the Hospital

This last week and a half, Jake’s been up at the hospital, having his annual/semi-annual Cystic Fibrosis lung cleanout.  It started when he came in to have his sinuses cleaned out of growth and gunk, which had been causing cluster headaches last summer.  The headaches had faded, but the scans showed significant blockage, so they decided that it would be a good idea to clean it out anyway, and that it would probably prevent future instances of the headaches.

What I wanted to write about was our school principal, Mr Conley.  He brought his family up to visit Jacob, and to bring up a bunch of cards and letters from some of the classes at the school (including some beyond Jacob’s own class).

First of all, I think it’s cool that Mr Conley comes up and visits.  It’s cool that the other staff here at PCMC are surprised to see a school principal visiting a kid.  It’s also cool that we’re not surprised.  That’s just the kind of man he is.

Early in Jacob’s school life, we were in a different school district, and obviously at another school.  We started our relationship with them with an adversarial posture.  We went to the IEP meetings with the attitude that we were going to have to fight to get every service we were legally entitled to, and they were there with the attitude to fight to be forced to do as little as possible.  As you can guess, we didn’t get that far.

When we moved out to Eagle Mountain, we came to the school with an intentionally more cooperative attitude.  We were also fortunate that the people we were working with in the administration were also predisposed to a more cooperative attitude as well.  It was some pretty fertile ground to plant and grow a great working relationship.

Over the years that we’ve been out there, the few small disagreements we’ve had have been over things like how best to implement plans, rather than what services should be included.  The school has been proactive in their efforts and adaptations for Jake (Jake also has Cerebral Palsy, as well as Cystic Fibrosis, and is in a wheelchair full-time).

Maybe someday, I’ll blog about my IEP experiences, and more about how it works.