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Girls in white dresses with blue satin sashes..
Victories and Defeats
Our little grandbabies are so precious to us, and we celebrate every tiny new victory, every gained bit of knowledge. He is my whole life, and I mourn as each of those things we celebrate in the children are taken from him: how do you play that game? How do you do a puzzle? When do I take those pills?
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Epilepsy – “seizure disorder” it’s more officially named, is the extra “person” in our relationship. Disorder – as though someone simply forgot to tidy up.
A war zone – a head injury – and suddenly we two have become three. We often joke that we “set it a place at the table,” so prevalent is it in our mundane. It joins us at dinner, snuggles up next to us on the couch, and wiggles into bed between us.
We make special preparations for this unwelcome member of our family, planning for its every need on vacations or day outings, organizing our days and weeks around its relentless demands, bowing to its whims, trying to anticipate its next move.
Every event, every accepted invitation carries with it an “if,” a “yeah, but don’t write that in ink.” Sure, we’d love to go to the lake…if he’s ok that day. Great, let’s go to dinner….as long as he’s well when the time gets close. Please don’t be offended if we cancel at the last minute.
People express sympathy, telling me how sad they are for the quality of life it has robbed from us, and I guess they’re right in some ways – things are certainly different now. But different does not mean less-than. Different simply means a redefinition of what’s important, and finding ways to celebrate what we have instead of mourning what we’ve lost.
We are frustrated by it, angered by it, and yet grateful in the midst of it. Its presence, borrowing the biblical analogy, helps us to separate the wheat from the chaff in our relationships. The wheat hangs in with us, even when things get rough. The chaff is gone at the first sign of wind. And that’s ok. Not everyone is cut out for dealing with disability and its various expressions. It’s just good to know up front who we can count on when it gets bad.
And he stays home, way more than most husbands and dads ever get to. It keeps him from working full time, which gives him more time to spend with us, helping in the kids’ classrooms, working one-on-one at the kitchen table doing homework, building a violin, restringing a guitar.
Tonight, this evil mistress took him to bed early, again. And when I finish writing and go crawl into bed, we’ll all three be there together. But on nights like tonight, when it rears its ugly head, mocking us, I choose to remember that it hasn’t won.
He came home, while others suffered injuries that cost them their lives or destroyed their souls, he got to come home. And that’s worth everything.
Beautifully expressed and dutifully inspiring.