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| Homeless Encampment, La Brea Blvd., just south of Olympic Los Angeles, 2016 |
Sophie's not doing too well, again. I'm not sure what's going on or when it's going to turn or even if it's going to turn. It's not so much seizures (although they're persistent) but more her overall well-being. This feeling I get when I spoon food in her mouth and she's working so hard to chew it. Or maybe she's not working at all. The way her juice comes out the corners of her mouth and drips down her arm. I imagine the sensors in her mouth dulled, struck by lightning, over and over. Some food falls out of her mouth and down the bib and I look away. I have been watching the suffering for a long time. She has been suffering for a long time. I'm not sure whether she actually is suffering or whether I am suffering doing the watching. The lines between us are blurred. I realize that's fucked up. Mea culpa. I forget to abide. I'm not sure when those questions when will it get better? will I figure it out? is it this? is it that? will she know? what should I do? will he know? stopped rising out of my brain. Perhaps I stopped feeding them the yeast of discontent and doggedness. The line between resignation and acceptance is thin and bloody. My tears are still clear. It's all pretty mighty and terrible. Terrible in the Biblical sense. Like awesome. Everything unleavened.
The only thing is to Be Here Now.
Today, my friend Melissa stopped by with her husband Marc. I haven't seen them in ages or even talked to her in while. I had been sitting in Sophie's room, reading a book while she slept fitfully, loaded up with rectal Valium. I'd been crying. A lot. Melissa texted me from outside, so I went out there and gave her a hug. She gave me a tiny silver medallion with a mermaid on it. She had no idea I'd had such a morning, that Sophie had had such a morning. Yet she was there with a mermaid charm. Everything lifted. Poof.
I read this somewhere:
You are my compass
I'm perpetually lost
I love this:
Those pictures are somehow twinned.
ReplyDeleteThank God for Melissa.
ReplyDeleteSorry to hear of your and Sophie's struggles.
ReplyDeleteI have never been here before but I am sending you and Sophie big hugs from across the Atlantic Ocean. Parenting a child with such disability must be very hard indeed and if one of my children had been dealt that card I am not at all sure that I would have been able to cope with things as well as you appear to have done.
ReplyDeleteYour honestly is refreshing. Have a child with an illness is unlike anything other worry, I think.
ReplyDeleteSo sorry, Elizabeth. Thinking of you and Sophie...
ReplyDeleteI am so struck by your way of holding opposing truths at the same time. Loving you and Sophie from here. I hope you can feel it. I'm glad your friend came by.
ReplyDelete"The line between resignation and acceptance is thin and bloody."
ReplyDeleteAll of this reminds me of what it's like to put on a mask and snorkel and enter the underwater world so close to our regular real world. All of a sudden, even as I can hear the birds in the sky above me, I am in a completely different universe which is as real and alive as the one I think I know and it is as different as being on the moon.
Bless you and bless Sophie and all of your family and I look at you and I know that in knowing you as I have come to do, my world has become so much deeper and you teach me every day to realize that what I know as real is only part of it.
That just sucks that Sophie is having a hard time and that of course you have to watch and help. I'm so sorry. I like the video. You need rest.
ReplyDeleteSending love as bright as our hot, blue skies. I believe any suffering that Sophie knows is so much less for your abiding love. Some days just cause us to sink. Then, once more, we rise. "Holding opposite truths" is pretty much the whole story. No wonder we tire. xo
ReplyDeleteGreat video -- especially the escaping gas bubbles at the end!! Laughter helps a lot, I know. And good friends arriving with precious gifts. And keeping things simple. Yes, BE HERE NOW. My love to you and Sophie, and of course the boys. How are they coping with this latest round of difficulty?
ReplyDeleteThinking of you and sending love.
ReplyDeleteYou write often about how you do it. Your friend showing up showering you with love. I think that is how most of us do it, how most of us get up each morning. Those small gifts that make it all worthwhile. xo
ReplyDeleteI'm so sorry to hear you and Sophie are suffering again and hope by now it proved to be a very brief slide backward. I tend to forget about C's pain during those awful episodes and focus exclusively on my own. Your writing about Sophie's sets me straight. Hopefully Oliver's amazing wit is helping you weather it all. (I just loved his: Hey, that's not Sophie. That's not my sister.)
ReplyDeleteI wish I knew what to say. All I can contribute is my admiration for your writing and your ability to sift these experiences into meaningful, powerful, poetic words. I hope Sophie gets better.
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