The Difficulty with Difficulties or What We Didn't Do on Our Summer Vacation

Summer is almost over, and I'm happy to say good-bye to it.   Frankly, it's been one of the hardest summers of our lives.   It's been a summer filled with hard, difficult, intense things.  Lots of family and extended family crises--one after another.  And the fallout is far from over.

I wrote about one of these family crises, my mother-in-law dying of colon cancer a week after her diagnosis in my last post, "The Grace of Being There."  I'm not going to delineate the other family crises, or the fall-out from them, but they've been equally difficult and distressing or else extremely perplexing--mysteries or problems that are far from yet being solved.

For some number of years now, I've noticed that difficult or traumatic things tend to lead to at least two separate and different sets of challenges.  First, there's the challenge of dealing with the negative thing itself--the direct suffering and stress that it causes.   Second, there's the challenge of dealing with the fact that the bad thing displaces or prevents the good things--that should have been there--from being there.  The decrease in good things--mental, physical, psychological, and social--then, in turn, negatively affects overall well-being.  After all, there's an ecology to life, a balance on which "normal" well-being rests.  Difficult and traumatic things seriously upset that delicate balance.

This past summer, Awesome, like the rest of our family, first had to endure, process, and start to try to come to terms with all the various crises of our summer, and the negative stresses they caused.  And then, as those negatives (crises and their fallout) proceeded to displace a lot of positives, Awesome struggled to absorb that second set of disappointments and losses.  In some ways it was harder for Awesome to deal with being deprived of the positive experiences that would have otherwise been there, than it was for her to deal with the negative and traumatic things themselves.  It would have been hard for any child to have missed out on summer positives--relaxation, fun, and absence of stress--but for a child like Awesome who has dealt with a serious number of epilepsy-related negatives and stress these past two years, it was especially hard.  She sorely needed a break.  Some respite, fun, relaxation, and happiness.  She needed a summer of just being a 12 year old kid doing kid things.  Instead, she got this stressful summer.

Epilepsy makes everything harder and more complex.  It's hard to turn the ship of family life in a tight circle with epilepsy on board.  Even if epilepsy hadn't been a part of the equation, given all the crises and their fallout, it would have been very hard to make this summer into a real summer of the sort that Awesome needed.  But with epilepsy always there in the background---not only with its drumbeat of constant intractable seizures and its perplexing puzzle of treatment--but with its unrelenting requirements that Awesome have special supervision and an environment kept as non-stressful as possible (to keep the stress from triggering even more seizures)--it became pretty much impossible to make this summer into a real summer of the sort Awesome needed.  With all the stresses of all these crises, we as people and parents, couldn't even begin to aspire to pull it off.  We were in survival mode.

And so, for Awesome when the summer wasn't busy being traumatic, it was busy being a deadbeat sort of summer.  Sadly, we didn't make it to the pool.  Not even once.  The only swimming Awesome did was in a friend's home pool, once or twice during the summer.

And despite our resolution to make it to the beach for a real vacation this year--because, going into the summer, we already knew we needed a real vacation, a real respite from the stress of the challenges of epilepsy--we also never made it there.

 In fact, we--Awesome and I--never left town at all this summer.  Not even once.   And while Awesome's dad David went off to Europe on business once (in the old days before epilepsy, we'd have considered going with him), and while various of her brothers headed off to various destinations around the world--from Greece to Seattle.......Awesome and I were pretty much grounded.

Not that I'm complaining, though in some ways I am, but.....the truth is what it is.  It was a pathetic sort of summer as summers go.  Especially for a child who is at the age when summers should be magical.  Or at least memorable in some positive way.  Certainly, the relaxing summer and the renewing vacation that we'd dreamed of, never materialized.  And meanwhile, family crises came, one after the other.  Our summer was like an underwater struggle in which we surfaced only to gulp air before resuming the struggle.  (I won't even mention the disturbing struggle going on in the background in the US political and domestic scene this summer....)

The math of difficult, traumatic things--in both their negative challenges and challenges of displacing positives--is one that applies, not just to one time crises or clusters of crises like our family experienced this summer, but is one that applies equally well to those who live long term with chronic conditions.   It's a math that all parents of special needs kids also know well.  For us, it is one that we know well from living with intractable epilepsy for five years now.

This is not a complaint; it is simply truth.   It's one of the harder things about living with these conditions.  It's not that we can't take the negatives.  It's just that sometimes we really miss the normal positives of life.  And our children miss them.

And it's because we miss them so much that when we get them, we are very appreciative of them.  Thankful for them.  We savor them.  We cherish them.

Awesome really missed those cherished positives this summer.  And so when she got any--and the closest she came was her brother Jacob taking her to the park every evening--she really celebrated them.

The truth is that having intractable epilepsy on board means that when crises and negatives displace the positives and good things of life, as inevitably they do, it's much more difficult to replace those positives.  There are less options.  And the options that exist come with so many complications, strings attached, and needed accommodations, that they are very hard to implement.  It takes a lot more energy, ingenuity, and resources to figure out what they could be and then implement them.  And during a summer when we were already stressed to the max, there was no time to figure out the puzzle of replacing positives.

We are happy that we are back into the school year, and back to the relative stability, routines, and imperatives to override other things, that it brings.  And while she's far from seizure free, Awesome is finally stable enough and has enough energy--thanks to CBD--that we are excited about the amazing school year we have planned for her.

More about that--how Awesome is doing epilepsy-wise--and the happy things that we have planned that will soon be on our horizon, in the next several posts.  So stay tuned.  And thanks for reading!