Just an observation...I recall that there used to be periods of time in my life where I could have something called "fun". It might have been on a vacation, or during a period of time where all was particularly going well and I was engaged in some particular activity. I recall one summer we spent quite a bit of extended time at Decatur when the kids were young, and it was weeks of tennis, crabbing, good food and friends, playing "capture the flag" - without much of a care for things outside that bubble. That was definitely fun. Certainly with a growing family and work responsibilities and school and working on the spousal relationship there were stressful periods and hard periods, but usually we had something to look forward to that we knew would be a stress relief - a ski vacation or trip to Hawaii - a period of time when you could (even if artificially) pack your troubles away and enjoy life. In hindsight I can see that a lot of what I considered stresses back then were peanuts compared to today, and I should have been much more grateful for the everyday life we had and found more fun in that, rather than just waiting for a particular period of time like a vacation.
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
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