We had a whirlwind of a few days at the end of last week.  Oh, there was a doctors visit but around that was our 15 year anniversary, long day of Kennywood with family and friends, Rachel’s HS reunion, church, a family dinner/annual “apple knock dahn” game and who knows what else went on…I sure don’t.  Something happened right in the middle of all of that which left me shaken to the core.

It started with that visit to the doctor.  Trey did not go to Philly because the anesthesiologist noticed a slight discrepancy between the blood pressure in his arm and leg during a procedure.  We (and then he) feared that it might be because of his gortex patch which is over his aorta from his failed surgery in August of 2011.  When the kidney doctors caught wind of this (for lack of a better term) they wanted to see him.  Even though his blood pressure was fine three times throughout the visit they wanted him to wear a 24 hour monitor to see if his pressure ever went high.  If it did it could be (could be) because of his one kidney not working right (which there are NO signs of that being the case) which may have resulted in the kidney excreting some enzyme (or something) that causes the pressure to elevate.  They could then possibly prescribe a medication that would block the receptors and stabilize the high blood pressure that he doesn’t have and wasn’t ever an issue (it was the differing pressures in his arm and leg that caused our/their concern).

Needless to say although I’ll say it, I was against the at home monitor.  Rachel though being of a gentler spirit (and much wiser in these ways) was in favor and we planned to put it on after Kennywood.  Somehow we thought it might just be a bit all over the place if we had it on for a day at one of his favorite places in the world.  So, on the way home after an exhausting day of fun/sun/family/friends/and depletion of all mental reserves we began to talk about the particulars of how it works.  Specifically, Joe had many questions and kept interrupting to encourage/instruct Trey.  He, as fried emotionally as any, was very concerned.  Me, as fried emotionally as any, was getting more and more frustrated that we had to go through this just so some doctor might hit some prescription bonus (I know, it’s not like that and they don’t do that but I digress.  It just didn’t sit right with me).  At one point when talking about how Trey should not take it off Joe jumped in and said, “If he takes it off the nurses will think that he died!”  He was very concerned and very emotional at this point.  As Rachel corrected him and encouraged him to relax and be quiet I heard it.

I didn’t want to hear it.  I’ve never heard it.  I hoped to never hear it.  I didn’t even know if he knew what “it” was.  However, he said it.  Trey said, “I don’t want to die.”

Straight to my core, my heart, my soul, it hurt…bad.  Immediate sweat on my brow and burning in my head.  I know he still doesn’t know what cancer is, that he has it, and what his diagnosis is but he said the first of a few things I never ever wanted to hear him say.  Yep, I didn’t want him to wear it.  I didn’t like the idea from the get go.  Had we said no this would not have happened.  Alas, we did and it did.  It wasn’t loud and no one reacted at all.  We we went on talking about the cuff/monitor and he even practiced “freezing” for when it would be on and pumping up on his arm.  When we got home he put it on and quickly fell asleep.  24 hours later he was back in bed wearing it as we took it off with no complications throughout the day.  It looked cute (in a pathetic way) with his anti-thunder headphones on as he slept.  We shipped it back to the hospital the next day and haven’t heard from them yet.

However, that moment is seared into my head and heart forever.  It’s joined by many others.  Some have been comforted, others have not.  It’s amazing (even though I teach this) how the ones that have been comforted are different as I remember the tears shed by those comforting me (search comfort on the search bar…there’s a lot written on here about that) and not the physical kicks in the stomach of those moments.  Nonetheless, you move on.  I’m sure it won’t be the last thing I never wanted to hear…that I hear.  It will be joined by seeing things I don’t want to see and feeling things I don’t want to feel.  You see, it’s just not up to me.  It won’t be.  It shouldn’t be.  It can’t be.

It’s amazing after a day of screams/laughter and loud amusement park noises, how quiet words can be so loud.