special needs parenting

Foreboding Joy

In my pursuit of personal development it recently became apparent to me that I resist vulnerability.  Since I am pursuing development, when I recognize a shortcoming my goal is to dive in and do my best to improve it. For this particular shortcoming, I decided to read “Daring Greatly”‘ by Brené Brown.  While I feel that this particular book is not a bullseye for me, the wisdom nuggets are plentiful enough that it was entirely worthwhile to read it anyway.  

Chapter 4 is where, for me, things got interesting.  Brené addresses ways that we stifle vulnerability, and one of them she calls “foreboding joy”; and what she means by that is that we dampen our own joyful experience by reminding ourselves of what could go wrong.  So, say, you have a vacation planned, and you spend so much time fussing over possible travel concerns or mishaps that you never let your guard down enough to really experience the joy and relaxation that is the very purpose of the vacation.  

This is where I’m stuck.

I’m leaving for a little mini-vacay with my older two kids on Monday, a long overdue visit to Virginia to see my sister.   Ben will be in school, and Mike will mind the home front with him during our excursion.  It’s all set, so now my only course of action is to let go of what ifs and enjoy.

But that’s not how things work when you have a medically complex child.

Two separate times our vacations have been interrupted by Ben’s  health crises, one was leukemia, the other was c diff.  At present, it appears that Ben has grown into another Cyclical Vomiting phase, and could have an episode at any moment, and if that happens he could very easily need an ER visit or hospital stay.  So where does that leave us?

I do believe that leaves us right in forboding joy territory. 

It’s practical and necessary to consider the likelihood of a health crisis during our brief jaunt, and have a contingency plan in place.  So for me, being a responsible parent means a certain degree of foreboding joy is necessary.  If I decide to spend a day in the mountains, it’s imparative that I ensure good cell coverage as I am the one with the unwritten (and possibly unwritable) algorithm of all things Ben in my head.  I am the one who knows which doctor to call for what and what med combinations to try for each scenario.  

In other words, parenting a complex child means living with a certain amount of foreboding joy at any given time, and that the foreboding exists on a sliding scale of how far away we go and how long we plan to be away. 

I hope that someday this is no longer the case.  I hope to be free to discard foreboding joy with complete abandon and live in each moment without fussing over the whatifs, but not now.  For now our reality is that the what ifs must be embraced and accounted for if we hope to enjoy simple pleasures like a road trip to visit family.  

And that’s just going to have to be okay.

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One thought on “Foreboding Joy

  1. Thanks for the comments. My child isn’t medically complex, but she is T1D, which requires constant monitoring, so your piece resonated with me.

    Like

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