Friday, August 9, 2019


The title is not a cry for it.


On help

I learned recently that Sophie was eligible to receive a home health aide, but I felt dubious about the whole thing for reasons I won't spell out since you've heard them ad nauseum for as long as I've been tapping away here. When she received a very generous number of hours, thanks to the great State of California and the Regional Center, I told my father and he said, I find that hard to believe, and I said, I know. I told my therapist about it, and she said, Wonderful! and I said, What will I do with myself in the mornings? and she said, Rest! and I said, What do you mean? and she said, Lie on your bed and read or go into your room and write and I mused on that for a while, lying there on the couch in her office where I've spilled the darkest of my guts and wept and been guided and helped for years. Asking and receiving help is acknowledged by most caregivers I know as two of the most difficult things to do, and while a lot of that has to do with the actual busy brain and body work it takes in terms of time and arrangement (CEO of Sophie, Inc. reports), a lot, I think, has to do with this deep, psychic attachment we have to our unique children and young adults.  It's less about burden, more about acceptance  and everything about love. Throw in guilt and responsibility and the ridiculous and very much American ideals of individualism and pull yourself up by your bootstraps culture, coupled by an ableist society that looks on disability as something so hideous and burdensome that we hear things like would you have had an abortion if you knew? or I'd rather be dead than dependent on someone or I could never do what you do -- well, it's damn hard to ask for help and even harder to receive it.

I am receiving it, Reader.

Sophie's morning aide is a delightful young woman who comes to the house weekday mornings and gets Sophie up and dressed and groomed (see above). She makes her breakfast and feeds her, brushes her teeth, packs up her stuff that she needs for her adult day program and then drives her there in our accessible vehicle. She talks to Sophie and is incredibly gentle and meticulous about her hygiene, the style of clothes she will wear that day and can fix Sophie's outrageous hair into all manner of amazing styles. She gives her choices and treats her with dignity and respect and humor. It's unbelievable, actually. The only thing that she's not allowed to do is administer medication, so I do that. It took me some time to train her and even more time to will myself into letting go, but guess what?

Reader, I am resting.

The universe is abundant.

Here's that Extreme Parent Video Project that I made years and years ago with the help of other caregivers, many of whom I had only met online. You'll see that asking for and receiving help was a common theme. Enjoy, share, ask for and receive with gratitude and grace.


  1. Wow! That's amazing news! I'm so glad you're able to get some more time to do the things you want to do. Sophie looks great in that photo!

  2. It is great that you have been able to find such a wonderful, kind helper for her. The universe is abundant and I am glad you are able to rest.

  3. Enjoy your time. I love hearing that the aide treats Sophie with respect and fusses over her outfit for the day. Oh, and the hairdo as well. I think styling suits Sophie!!


  4. Beautiful, beautiful Sophie! She looks more put together than I do when I go out these days, I'll tell you that. What an angel your new aide sounds like and I am so glad that your counselor gave you such good advice but mostly I'm glad that you are taking it.
    Help. Yes.

  5. Wonderful news and Sophie looks well and well cared for. I had forgotten about that video.

  6. She looks beautiful. and relaxed.

  7. Sophie knows she is in good hands and you know that she is in good hands. It's not easy to accept help. What a relief when we that step. I think I recognized Lilycedar in that beautiful video. Thank you for posting it again.

  8. I overwhelmed with happiness that you’re getting such caring help. This post made me cry in the best way. Sophie looks lovely.

  9. Hallelujah! Well deserved.
    That's an incredible photo of Sophie. One of the most beautiful and present I've ever seen on here. She's just lovely. And so are you, hardworking mom.

  10. I am so happy for you. My oldest is a caregiver and LOVES the two young people that she works with. She has opened my eyes to the world of caregiving. I am so happy Sophie has someone who treats her with dignity and respect right down to the hairstyles and outfits that every 20-something cares about. Sophie looks content and loved in this photo. I hope to see you at GU this Fall or maybe somewhere else. Thinking of you as we prepare for #3's to do their thing. Sigh.

  11. I am delighted to hear of the Wonderful Help Sophie qualified for and you are now receiving! Yes, very hard to ask for and to receive Help as a Caregiver, or an Aging Adult whose Independence is diminishing... but when it turns out to be such a huge Blessing then the Cares can melt away somewhat and Rest can be finally received. I'm glad you're entering into Rest... and Sophie looks so much like you in that Image!

  12. I cried a little when I read this. How wonderful to have a bodhisattva in your home, helping to take care of your child. And Sophie looks a bit like Audrey Hepburn with her 'do'...

    Rest, dear mother. You deserve it.

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