Tuesday, January 13, 2015

#6 Maybe and a Bit of Civil Disobedience



I realized only now that I didn't reassure all of you who so kindly commented on my last post about Sophie not being able or wanting to bear weight on her right leg. She went to bed last night with "the issue," but when she woke up this morning, it was not "an issue." I commented on my Facebook post in response to that, but I didn't do so here. Basically, I think we can say that the #6 Maybe from my previous post wins out this time. I emphasize this time because the initial post -- however perceived -- was meant to express the oft-maddening aspects of longtime caregiving, particularly when the person you're caring for is non-verbal or completely dependent on you. In any case, rest well. At least right now, in this moment, Sophie is walking around like normal. Who the hell knows why this has happened a couple of times? A friend asked me what the neurologist would say. I told her that The Neurologist would probably shrug her shoulders and not know. I believe I've said enough times that equal to the anguish and sorrow of learning Sophie's diagnosis and then witnessing her refractory seizures -- and I mean equal -- is the lesson learned that physicians and The Powers That Be do not know everything or even, sometimes, anything. There are moments when only brutal humor sustains me (and no, prayers do not sustain me -- neither mine nor yours, although I do appreciate the thought!) and last night was one of those times. Hence my flippant list.

Behind all humor is sadness, said Mark Twain, and that adage is so very true for me most of the time. There's also anger and frustration and weariness.

Oh.

Sometimes behind humor is just plain humor. In the picture above, Oliver is shouting through his new megaphone. He spent the weekend down in Orange County with dear friends, one of whom is a sucker for all things Oliver wants and therefore bought him this real, battery-operated megaphone. Good Lord, ya'll. That thing is loud. This morning, Oliver shouted a stream of invectives (no curse words) toward the construction workers and contractors working behind our house at building another McMansion. I have to admit that it was really funny with no sadness behind it, and I felt sort of proud to be raising a hell-raiser in addition to a teenager who is besotted with his used car and a near twenty year old that so resiliently deals with seizures, drug withdrawal and weird right legs that won't obey her.

16 comments:

  1. Glad to hear of Sophie's improvement. I totally get your flippant list of possibilities - both in how sometimes you have to joke to survive and also in how you can start to imagine all sorts of possible harrowing outcomes if your mind starts to go there. And yes you should be proud of all three of them. And of yourself too.

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  2. I want to hear every word that Oliver is saying. Love to you and to Sophie and that handsome new driver.

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  3. Well thank god that's all over...now we can get on to screaming into megaphones. I've ALWAYS wanted one of those, mostly to use out my car window when someone in front of me is being an idiot or just to shout happy/mad things at the world. LOVE a megaphone!!

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  4. How little modern medicine knows is astounding!

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  5. Speaking of dark humor - some folks like to say 'God is in control." My friend Ronnie says, "Right, yes, God is in control and he hates you." Now that makes sense.
    - Karen

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  6. You hold whole worlds in your arms and keep them spinning, each of your children getting just what they need. I bow down.

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  7. At least you have a row of shrubs/trees between you and the construction zone. That Oliver is a caution, yes he is. And I mean that in the best (old-fashioned) way. Love to you and Sophie, too. N2

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  8. so glad it was #6! you ought to try that megaphone, and see what happens when your words 'resonate'

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  9. A megaphone?! Good Lord is right. Just don't let Oliver get arrested for disturbing the peace. (Unless you want to take civil disobedience THAT far -- but I'm guessing that's an additional layer of stress you don't need!)

    Glad to hear Sophie's leg corrected itself.

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  10. Seems to me Sophie's leg and Oliver's megaphone can both be added to your 'what the hell' list.

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  11. So glad it's #6. And yes, it is so upsetting and frustrating when doctors can't figure something out. We want answers, dammit!

    A pox on the person who gave Oliver that megaphone! They are exceptionally loud. Will he use it judiciously? Can any youngster? Oh my.

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  12. A megaphone? My god, teenagers never cease to amaze me. My own son has brought home the strangest stuff. In the last few weeks be has brought home a used TV (weighs about a 100 pounds) and a Red Rider B.B. gun.
    Oh! But I have an idea! The things YOU could do with that megaphone! You can put the phone on speaker phone and talk to them! Yes? Or stay in bed all day and shout commands! Use it when people stare at Sophie. "Move away. There is nothing to see here!" Or just use it to should FUCK to the world. Your boys will get tired of it soon and then it can be all yours.

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  13. I'm so glad to hear that Sophie is walking again. And it's so true that doctors, and in particular neurologists, often grope around in the dark when diagnosing and treating. Here and there, I've encountered a few who are candid about this and what a breath of fresh air that is. But too many of them still play at omniscience.

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