Friday, August 9, 2019
The title is not a cry for it.
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.