The mara-coaster

Having a child with seizures, and I would say any disease or disorder of a chronic nature, has been compared to both a roller coaster and a marathon. I like parts of both of these analogies.

The roller coaster is obvious with its ups and nausea-inducing drops, dark tunnels, and the pressure of so many G-forces through unexpected turns. But eventually the ride stops, and you get off and go about your merry way. So, this analogy breaks down after three minutes.

The marathon works for a little while because it is supposed to remind you that you must pace yourself through so many trials and tests. You must not let your mind and body sprint through the diagnosis and beyond or you will collapse. But see, in real life, with real things, you do collapse sometimes, and even then you are not disqualified from the race. It keeps on going even if you must be dragged on your face through it for a while. And in real life, we never pace ourselves. We try to outrun the sad stuff or to soak forever in the hot tub of the good stuff, as if we never have to get out. The marathon analogy leaves me wanting too.

It's really some hybrid of the two, but even than breaks down after a while, as do all analogies really.

Words are just words.

And there are times, even for a logophile like me, that words have no meaning. During those times, platitudes and analogies fail, and I just want to be sad in the silence for a while. I'll get over it, sooner than later most likely, and sure I'll "deal," but I have decided to give myself permission to grieve things along the way. And not apologize for the fact that I need to grieve things. I don't think I ever lose sight of the blessings in my life or the hardship in anyone else's, just that for a few moments The Most Recent Disappointing Thing is the worst thing I am currently dealing with.

Yesterday's Disappointing Thing was that Ella had a seizure, her second post-surgery. I already know this: it's all relative because last year alone she had over 80. Prior to surgery we would be celebrating so few seizures. But surgery changed the rules of the game. And now we don't expect any more seizures. Ever. We put her through this hard thing with the hopes that seizures would piss off forever, even though we knew that statistically the chances were good that they may not. But we had to try. And we know that she is way better off now than before. It's just that we're greedy. We want normal and whole and healed. Yes, we may still get that, and we will never stop fighting for it, but sometimes the bumps and twists and turns bog us down for a minute or a day. And I gotta believe that it's okay to not be okay.

Romans 8:26
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
Holy Bible, New International Version®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

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