Friday, January 03, 2014

Chronic Illness: The Parents Part I

As I said yesterday, we now know that Bridget’s issues are not life threatening.  But we also now know after this visit that they are likely to be long term (more on that in another post). 

However, we didn't always know what her prognosis was.  It’s emotionally easier now, but it wasn't emotionally easy at all the first two trips to this rodeo.  Or even, for that matter, Christopher’s trip to the hospital. 

When we welcome parents to this club, or actually more like console parents when they reach this club, the first thing I try to share with them is to be gentle on themselves when they start experiencing the PTSD aftershocks.  I know there must be levels to this PTSD: finding out something’s wrong, going to the hospital, finding out something is really, really wrong, and further along the path to hell than that, which we have not gone 

But at every step on that path for us, there has been some hellish moment that I will not forget.

  • ·       Driving Christopher to the hospital for a direct admit from the pediatrician.  I was an exhausted, scared, and completely drained automaton trying to reach Dave in a meeting at work.  Then I remembered it was Wednesday and they serve fried chicken and collard greens at Novant Presby Main and I distinctly recall being a little bit excited about that.  Silver linings kind of girl, you know.  In all fairness, should you be judging me, Dave had the exact same double reactions:  CRAP!  Oh, but fried chicken!
  • ·       Bridget’s first trip to the hospital when the doctor noted her sats were really low, but the machine wasn’t beeping. The doctor’s look of panic sticks with me. The machine had not been hooked up with the hospital’s alarm system yet, a situation soon remedied, which also started a whirlwind of panicked activity from all the available doctors, nurses, and respiratory therapists. 
  • ·       When the doctor told us that Bridget needed to go to PICU.  The funny thing about that one is that she immediately told us Bridget’s life wasn’t in danger, so this moment is not as hellish as it could be, but it is still held in a tender part of my soul.
  • ·       Bridget’s second trip to the hospital where we went to bed at 2 liters of oxygen and woke up with her at 5 liters of oxygen.  I said “Jesus Christ” and not at all in a religious way.  This moment is probably the deepest and scariest one of all.  This is the moment I knew things were very, very bad. By the way, it’s never a good day to have the first words out of your mouth be significant cursing.
  • ·       At the time, it wasn’t scary.  But now, looking back at it, when all (and I mean ALL) the doctors and respiratory therapists were bringing up cystic fibrosis during Bridget’s second trip.  This is the path to hell that we go on the off ramp.  Statistically speaking, we should still be on that path, but Bridget has such an incredibly rare illness that we were blessed enough to the tiny off-shoot.  Plus, you may recall, I kept licking her and she tasted dirty, not salty.

The crazy thing about this is how even just writing about this, I am accessing a very tender, soft, vulnerable, emotional, scary spot in my soul.  I get teary. I get sad.  I process through a little of those feelings---and I know everything is going to be ok!!  Yet, those spots are still there.  And, of course, writing about these moments is going to let me access them. 

So what’s the point of this blog entry?  (That question may have occurred to you earlier, but you can just shut your fried chicken hole!!)  It’s not a pity party, believe it or not.  I would love to help other parents when they get here.  I don’t think we have PTSD, although I do think we have residual stress and adrenaline (in spades), especially when we hear Bridget cough.  I think that’s normal for parents who have been anywhere along this path. It’s ok to be a bit hypervigilant when they get sick again.  It’s ok to get teary months and (I will assume) years after some incident on this path. 

Welcome to this crappy club.  Come over here and get a big hug.  

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