Sunday, June 29, 2014


It's barely two o'clock, and I've just collapsed on my bed after helping Sophie to her room, peeling off my sweaty clothes and guzzling cold water. I walked Sophie to LACMA this morning, loathe to sit around the house and wait for the teenagers to arise. As you know, Sophie can walk, but not for great distances, so I pushed her along and periodically stopped, helped her up and out to stretch and walk for a bit. What a good idea! I thought to myself many times as I made my way to the museum. No, this isn't build-up to some catastrophe. Look on it, rather, as the proverbial drop of water on the forehead, tortuously slow but torture all the same. What's going to happen? A caregiver and her daughter -- more and more, as Sophie ages, I morph into Caregiver and less Mother. We took the elevator up to the third floor and walked around big empty galleries lined with Greek sculpture.

I thought the dim lights and empty echoing rooms would somehow calm Sophie as she was moaning and groaning, shifting and fidgeting in her chair. She wanted to get up, she wanted to sit down. She wanted something. I don't know if she wanted anything.

Drip. Drip. Drip.

I might have hissed a few times for her to be quiet. Stop moaning. (Caregiver/Mother knew she wasn't in pain or uncomfortable. Don't ask me why. I just knew.)

Sophalofa Sophamona.Sophamoaner.

I was acutely aware of the random people walking through. Sophie's groans and moans echoed, and people stared. I looked straight ahead. I set my jaw. I pretended not to notice. The imaginary conversation that runs in my head nearly non-stop included Relax! No one notices! It's like when a baby that's not yours cries -- it's really only irritating to the mother! Except for on airplanes! Maybe Sophie is just vocalizing now that her brain isn't so occupied with seizing! That's a good thing! You're dreaming! It's fucking obnoxious, and I don't think I can stand it anymore! My life is ruined! But isn't that statue amazing? Those implacable faces, sightless. Should I take a photo of the headless woman? She's more ruined than I. 

Drip Drip.

I got on an elevator and made my way to the Southeast Asian art rooms. They were totally empty and even more dim than the Greeks. I thought that surely here Sophie would be quiet. I imagined myself as Tibetan, calm and tranquil, also implacable, yet with a smile that hinted at humor. I let my shoulders relax and let Sophie moan. I didn't hiss.

The ideal woman in Tibet had large breasts, was curvy and earthy. I wished I were Tibetan, knew that I'd be a better Tibetan woman than American, pushing my disabled groaning daughter around a fancy museum, stifling my own hisses.

You can't strive for implacability, much less equanimity.

The walk home was excruciatingly hot. Sophie moaned the whole time, kicked off her shoes and kept dragging her bare toes on the sidewalk. I kept having to stop and put them back up on the footrest. I felt sweat dribbling down my back and my face in flames. I even stopped hissing and just did it. Pushed and walked, told Sophie that we'd be home soon and she could walk around her room and I'd leave her alone. At some point I stopped to rest, took a selfie and sent it to one of my fellow extreme parents with the caption Angry Caregiver Mother. She texted back We should start a calendar! I won't include it here but rather let you think of me more like this:

Drip Drip.

Maybe this:

***Angry Caregiver Mother


  1. Dearest Angry Caregiver Mother, I love you.

  2. Not sure what I love more: your dark humor or Sophie's curls. I am sorry it was a hard slog. I know the feeling well. Cool museum tho.

  3. Oh wow...took my sophie to the big city aquarium and whilst fishies swam in their watery numb silence, all I could think long will she hold out, how long will she hold out, how long will she hold out...

  4. Oh wow Elizabeth. Your writing just gets more and more amazing. This is heartbreaking and at the same time not a drop of self pity. There's humor even! You are wonderful. And such an inspiration for all caregivers. Sending you blessings, peace, and love.

  5. How could you NOT be angry? Resilience and humor in the face of it; priceless.

  6. You are like no other mother, and of course, we are all alike in some ways.
    You are like no other writer. I'll tell you that.
    Sending great love.

  7. I bet a lot of people would commiserate and buy your calendar! I'm sure it was good for Sophie to have a change of scenery even if she was vocalizing otherwise.

  8. Oh, that conversation you had in your head? I can SO relate to that.

  9. I know those moaning, complaining sounds. C. gives us that gift on occasion when she's in a better place than usual. My daughter, P. can't tolerate them but I love them: Finally, communication! Something akin to speech!

    Often several gulps of water will soothe her and stop the moaning. Other times, if her brace and shoes were still on, then removing them does the trick.

    Sadly, her needs are very basic.

    And I've got a few great staring-neighbors anecdotes. One of them ends with my returning downstairs after dashing home for a second to find the staring five year old neighbor with a leg poised in mid-air, aimed at C.

    I suppose C. "started up" with her. (In my dreams.)

  10. There aren't many posts people write that get me tearful. By the time I sit down to the Internet, I don't have it left in me. No offense, just a statement of fact. I'm usually done weeping by the time I get here.

    This one though, had a few streamers. I have an unfinished thing about an experience in a restaurant over the weekend and many of the feelings are eerily similar, some different obviously, since Bennett can get up and walk around on his own, and very well. Bennett is only 6, and not much has changed for him since he was 2. Some has, but not as much as people think. Projecting forward to 18, I am scared beyond shitless.

    I read blogs like yours, Claire's, Single Dad's, all veterans...doing this for YEARS all with older children. You have this series you write called How We Do It. Frankly...I don't know that I CAN do it...

  11. You're onto something with that calendar idea.

  12. I call it my fuck off face when I have to deal with Miss Katie having a meltdown in public. Strangely enough, people don't approach us:)

    I don't care anymore if she makes noise, or drools, or people stare at her. I find it quite amusing when small kids stare at Katie. Kids as young as a year old can tell there is something wrong with Katie and they look. It sure makes their parents squirm though. I don't mind kids asking about Katie, I just tell them her brain doesn't work right.

    I admire you Elizabeth because I couldn't keep on being Katie's fulltime caregiver after she was sixteen or seventeen. There were days when I thought of driving into an oncoming semi to put both of us out of our misery.

    Now I can be her mom instead of her caregiver which is nice. I felt guilty and bad for a long time but I'm ok with it now.

    Thinking of you and sending hugs.

  13. Had a similar experience with Nicholas at his 6th grade graduation, he was screaming bloody murder. I feel your pain fellow soldier.



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