Tuesday, June 16, 2015


Today, I had an epiphany.  Thanks to a friend who helped me talk things out...

I've been thinking about the idea of Shelbie needing oxygen outside of therapy.  I've been thinking about how I have to keep hounding Sam to take his breathing treatments and...thinking about a story the respiratory therapist told me yesterday.

The therapist was telling us what was meant to be a funny story.  An elderly couple was in and the wife was doing rehab.  They put oxygen on her and then left to attend to another patient.  When the therapist went back to the lady, the oxygen was off.  This scenario happened over and over. She kept putting the oxygen on, when she turned around, the oxygen was off.

The therapist finally asked why she kept taking the oxygen off and found out it was her husband taking it off.  When she asked why, the husband said, "I just don't want her to get addicted to it."

It's a funny thought really...we breathe oxygen every day, how could anyone get addicted?

I asked Sam if his breathing treatments help him.  He said "Yes."
"Then, why do you not do it all the time?" I asked.
"I don't want to get addicted to it.  I don't want my lungs to get use to it."  he explained.

I sort of get it, but it's kind of hard to process.  Finally today, after talking this through with my friend, he said, "It's not about getting addicted, it's about not wanting to be engaged with this disease."

Ohhhhh....Ya.....that makes sense!  I know that once Shelbie has to start oxygen all the time, she will never get off oxygen and that is a very sad and disturbing thought.  Sam feels that doing the breathing treatments every day means he will never have a life without them.  And...I'm sure it was the same feeling for the elderly man who didn't want his wife addicted to oxygen.

Once you go there...you are committed...engaged in the disease process.

We are very much disengaged in the disease process.

None of us want to go 'there'.

I don't schedule the kids blood draws like I should.  We miss important appointments...like, we still haven't followed up with the cardiologist to get Shelbie's cardiac MRI report!!  I was all bent on getting it but do I really want to know what it said?  Nope...not really.

Sam doesn't want to commit to breathing treatments because it's acknowledging the disease and that he is sick.

I guess for now, it's the way it is.  I don't know if there is a right way or a wrong way of doing things.  We've never faced these things before.  I don't know how we are suppose to be.  Suppose to do it.

Life is hard sometimes and the lessons...inspiring but not always empowering.


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