Friday, September 27, 2013

Diastat Days

photo by Jennifer W.

I woke up this morning at just after 4:00 to Sophie howling in her bed, not a croon but a howl, the seizure slicing through her throat, air pressed out. She had two more like that, I dithered about Diastat for the thousandth time should I wait should I do it should I wait no do it no wait just do it. I snapped off the plastic top and tore the foil envelope of lubricant, inserted the tip into foil and then into Sophie. Eventually, her eyes fluttered, her hands, in claws at her ears, relaxed. I lay beside her. There is no one to call, I told Suzy, as I wandered the grocery aisles, picking up flour, sugar, eggs, butter, the bad stuff for the five dozen cupcakes I will make this evening. There's nothing to do, sometimes, but endure, I thought, and pushed the for what away. Later, I leaped off the no white food cliff, smeared Brillat Savarin on a baguette, ate it in my car while Astrud Gilberto sang to me.

19 comments:

  1. "for what..."

    .I know that feeling.

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  2. My heart breaks for you and Sophie in reading this. The incredible love and strength you possess is clear. The continual stress you endure without falling to pieces is hard to fathom. I am so very sorry. Sweet Jo

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  3. It's the "no one to call" that kills me. No one to turn to. There is just you, your daughter, and the devil. I know.

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  4. Wish especially at those moments there was someone to call. Echoing others with all else.

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  5. That may be the single most beautiful and heartbreaking photograph I have ever seen in my entire life.

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  6. I go through the same questions every time. I hate having to give Max diastat, or ativan. Have you heard of the use of nasal versed instead of diastat? I have a couple of friends who have been trained on it.

    I hope Sophie's day was restful and free of more seizures.

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  7. I agonize over the diastat too. We just got a new prescription for nasal midazolam as an alternative to diastat. I blessedly have not had the occasion to use it the last few weeks but I'm excited that it's nasal and that it cost me $10 instead of $100.

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  8. This crystalline distillation of experience is an honor to witness, Elizabeth, truly.

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  9. Astrud Gilberto may not be a cure, but she's certainly soothing medicine.

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  10. LIke MIchelle said, I witness. I also fully support jumping off the white food cliff, as opposed to say, another type of cliff, which would be tempting, I'd imagine.

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  11. I have no idea "for what" but your ability to use your writing as witness splays my heart wide open. And makes me ponder what white foods I could send you in the mail ...

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  12. Love and light. And more soothing music and perhaps some brown liquids in a crystal glass with a single ice cube.

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  13. Sometimes I can't find the right words. You are a marvel.

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  14. there is someone to call. me. ah, astrud.

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  15. My heart is with you, dear friend, sharing the pain of those unanswerable questions

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  16. Sending good thoughts and a hug...sorry I don't get around to the blogs much these days...thinking of you today...beautiful beautiful photo...

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