Saturday, April 4, 2020

We Can Do Hard Things, Saturday 4/4/20

Spring Break, 2020

Whelp, it's Saturday again.

Let's talk about service, shall we? There's service to one's country and service to one's god or goddess and there's service to one's fellow man or woman or non-binary human. I've been thinking that we caregivers of disabled persons have service  down. We've got it honed. Despite what you've heard probably way too often (mea culpa) about the difficulties and burdens of service, there are infinitely more benefits to have been called to do so -- to serve -- than you could possibly imagine. Yesterday some cool literary person invited me to join one of those Facebook groups for writers, so I figured why not and posted a brief introduction to myself in which I said that I was a writer and a caregiver to a severely disabled young adult. A probable well-meaning woman responded with a "heart" and wrote: "It makes you look into a mirror and realize my life could be worse and it gives you even more compassion."


Let me be of service to you, please.

Comments like that make me look into a mirror and pledge to do better in expressing myself -- to demonstrate that caring for a severely disabled young adult is the opportunity of a lifetime. It's hard as shit, especially when decades pass and you're basically doing the same stuff, but it transforms you in the best of ways, ways that others might envy rather than thanking their lucky stars.

Are ya'll thinking I've eaten too many CBD gummies?

The Virus does make caregiving more difficult because all the supports you normally have, if you're lucky -- things like caregivers, day programs, entertainment, music therapy, outings, etc. -- stop, abruptly.  It's reminded me of the early days of caring for Sophie -- the long, long hours where ritual and routine take on a whole different meaning. I find myself investing the regular routines with meaning, and the meaning is service.

The village is hunkered down, though, and our children and young adults might not know why or what's happened. I do think Sophie knows on some deep, intense level that the entire earth has tilted, and I am certain that other exquisitely sensitive souls who have no ability to communicate and are thought deficient do, too. Yesterday, the adult day program that Sophie normally attends had a music session on Zoom. It was a beautiful thing to watch.

How do you do it? people say,  or I couldn't do what you do and that makes us laugh -- sometimes bitterly with disappointment but mostly with glee because we know that we can and so can you. I don't want to wrap this up with a bow, but so can you. We can all do it, together. Serve. Be of service.


  1. That's something I am really not good at. And I'm not proud of it.

  2. Sophie’s exquisite hands moving inside that Beach Boys song.❤️

  3. it transforms you in the best of ways --> yes. that.

  4. Thank you for the reminder. And the marching orders?

  5. Supports would Help, but if you'd not had them, then Caregiving Diaries can be flecked with weariness of going it alone. But what you've never had you never miss. I've found these Pandemic Times revealed that we had a Rhythm and Routine that I wasn't even as Aware of as I am now... not much really Changed for us... just for everyone else. With the exception of coarse that now my Mortality is much more in my Face and that brings Anxiety about what would become of The Man and Princess T if something happened to me?!? Or if something happened to them one at a time... as Viral Warfare struck... and it was beyond my scope of handling it here and alone? I know The Man would never make it past Triage at a Hospital... and I'm not sure about my Grandchild's ability to fend off the Virus, given her Medical History!? It keeps me up at Night now, since it will now be something I always have to consider strongly.

  6. My care-giving has not been as extreme or as prolonged as yours, or as my sister's. I raised a disabled (cerebral palsy, developmental delays) child to an adult, and sometimes onlookers felt sorry for me or him or as if I was a heroine, when really you just do what has to be done and make the best of it, at least that's how it was for me, and my son wasn't very old when I realized that in comparison to many other disabled children and their parents, we were fortunate. I know the grief of it and I remember the exhaustion and challenges and anxiety, yet still and always feeling that my child was the best thing that ever happened to me, hard as reality was (and is) sometimes. For me there was an end in sight to the daily responsibility, as he was transitioned from public school to a sheltered workshop job and a supervised group home and he is very happy with both, and I'm free of his physical care and so on. I'll always be the mother of a six-year-old, in some ways, but he is who he is and I'm grateful for all the "helps" in place to care for him now, and after I'm gone. I do worry about those like you, and my sister, who carry such a heavy burden of daily caregiving with no end in sight, very little respite, and so much more anxiety due to health issues of your beloved children ... but oh, how I admire your strength and commitment, your resilience and wisdom and ability to LIVE a good life. -Kate

  7. Dearest Elizabeth-"Are ya'll thinking I've eaten too many CBD gummies?" made me laugh. And you go ahead and eat as many gummies as you want. Service-what to say about service. In the Buddha world, we are encouraged to pay it forward. He woke up and taught for the next 40 years-for free. So that others could be free. You are a person who understands service deeply. In some ways I think that is the only reason we are here, to serve others. It is a profound shift we could make now, from our everlovin' selfishness to seeing the needs of our fellow beings. From hoarding to generosity. From fear of others to seeing our shared humanity.

    I weep when I think about the tremendous service first responders, pharmacists, grocery workers, truck drivers, farmers and farm workers and others on the front lines are doing, day after day. For all of us. That part of my service is staying healthy so I don't become a sick patient in a hospital that is overfull. That my act of service involves distancing and wearing a mask and dancing down my empty street so the occasional car or passerby is cheered by my silliness.

    We are here to be of use, as Marge Piercy has written. Let us thank one another for our acts of service. For the warm cookies my neighbor brought me last night (as I left homemade masks on the doorstep for my neighbor seeking to protect the folks in his restaurant kitchen). We know how to do this. It is from our undefended hearts to care for all of life. We have just gotten distracted. We can recover our true nature.



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