Help

The title is not a cry for it.

Help!

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.

Alison Piepmeier, A Meteor

Night Sky, Perseid Meteor Showers
Joshua Tree, California
photographer: Carl Jackson

When I drove out to the desert on Thursday with a friend to watch the Perseid meteor showers, I knew that my friend Alison Piepmeier was dying. Alison was a beautiful woman whom I met online many years ago and with whom I spoke several times over the years on the telephone. She was a badass and a kickass professor of women's and gender studies at the College of Charleston. Her delightful blog Every Little Thing chronicled her life as an academic, a lover of Star Wars, a mother to her darling daughter Maybelle and, of late, her struggles with cancer treatment and death and dying. She had an infectious smile. She was working on a book about the high incidence of abortion of fetuses with Down Syndrome and worked passionately to "change the game."  Her daughter Maybelle was the delight of her life, and I think that child will be held with love in the minds and hearts of tens of thousands of people who were fortunate to know her a bit through her mother's writing. Alison appeared in the Extreme Parenting Video Project that I made years ago, her smile brilliant and her hair thick and curly. She was a dogged and passionate advocate for the disadvantaged and the disabled. She wrote a brilliant and moving essay in the final weeks of her life that will tell you everything about what kind of soul she possessed.

She died of a brain tumor in the early hours of Friday morning, surrounded by her husband and family and friends. She was 43 years old.

I saw many meteors on Thursday night and into Friday morning, light shooting across the sky, one after the other, the desert still and vast, implacable. I thought of Alison and her passage from this world to the next, how grateful we were to have her here and how much we will miss her.

Listen to and read these:

Down Syndrome and Equality

Thank You For My Beautiful Life