I’m hard-pressed here to come up with something witty, insightful, inspiring, bitter, judgemental or damning on the 21st day of being honored for being a MoFaCa. So tonight I’m going to do a quasi-repeat from my old blog, a moon, worn as if it had been a shell. The post is about ten years old, but real MoFaCas know how little things change. My interest is to tell it like it is and is means uniquely slanted (biased) toward the dark-humored, the rueful, the cut through the inspirational crap about being a full-time caregiver. There’ll be places that will sound dated because they are. I’ll put those parts in brackets in BOLD so that you remember not to think something is wrong. Sophie is doing well, well, well, right now, on a cocktail of cannabis medicine and very very low doses of two anticonvulsants.
Remember, the old parts that are not the same are bracketed and bolded.
Stay sharp!
In the dark days of the last century when the internets were just a kernel of rice in the brain of Al Gore, my friend Jody, whom I had met in a mothers' support group at New York Hospital in that other big shitty, turned me on to a newsletter for mothers of children with significant disabilities. I think it was called MFH, or Mothers From Hell, and it was a perfect antidote to the treacly Mothers From Holland that was de rigueur at the time. Or was it Welcome to Holland? Dang, I wish I had a copy of MFH now. I bet they sent it stapled and tri-folded.
Don't get me wrong. There are a myriad of blessings that come with being a full-time caregiver, and I've written literally hundreds if not thousands of pages and posts that testify to what I say is the honor of caring for someone who is entirely dependent on me. I can tell you about resilience and virtue and strength and a community of human beings that are, without doubt, the most courageous people on the planet. [A designated NaFaCaMo calls for some levity, though, because -- well -- just because. I've just come out of a particularly grueling couple of months with Sophie in a sort of perpetual crisis that culminated in a fairly useless hospital stay that cost nearly $70,000 (so far, and I'm not joking). It took her approximately three weeks to recover from that stay and whatever was going on before she was admitted -- three weeks of barely being able to walk, of losing weight, of near-constant seizures in the early hours before dawn, among other atrocities. I'm thrilled to say here that she's turned a corner and is back in school with a spring in her step. It seems that the combination of increased Onfi and a new version of CBD and THC is doing something good, at least for now. I don't want to jinx it, though, so let's not dwell on this perhaps temporary hiatus other than to give thanks. Thanks!}
[It's taking me longer and longer to recover from these downturns, though, and can I tell you that it's not really Sophie -- or her disabilities -- that takes its toll. It's what we call the systems of care -- or lack thereof -- and the culture in general that makes our lives so difficult, when they're difficult.] Remember that the bracketed, bold stuff is dated, sort of. Sophie is vastly improved, but the systems of care (as we saw them during the pandamnic) are not.
Hopefully, I can touch on some of these issues over the next month. I'd also love for you, dear Readers, and especially you dear Caregiver Readers, to tell me your stories. I want to know what your personal record is for changing wet bed sheets in the middle of the night or the greatest number of calls you've made to your insurance company about a particular charge. [I'd love to know what outfits you've worn to IEPs (I myself wear a leotard and do a tightrope walking act) or your methods of dealing with constipation.] How about doctors who refuse to acknowledge the efficacy of CBD or who downplay side effects of anticonvulsants? How about commercials for pharmaceuticals and making a case for medical necessity when you have to renew prescriptions at the drugstore? What's the longest you've gone without a full night's sleep -- months? Days? Years? How about the siblings? How resilient are they? Did they learn how to buckle themselves into a five-point harness before they knew how to walk? How do you deal with the phrases of the well-intended -- the I don't know how you do its? the God knew what he was doing when He gave you [insert the name of your child], the God never gives you more than you can handle, or my personal favorite There's a reason for everything, and your daughter must be teaching you so much.
Let's hear about the marriages and the divorces and the shitty Family Court hearings when you’re defending your purchase of diapers and a sexy handicappted-accessible Kia Soul auto loan-- hell, let's hear about the affairs. You spend a lot of time at home! There are no judgements here during NaFaCaMo! If you're a woman have you turned your home into a convent or cloister?
And, here's the golden question that I know you've been asked at least two million times:
Are you TAKING CARE OF YOURSELF?
The "God never gives you" lines make me crazy. Like legit insane. I'm not even a caregiver at this level and it makes me furious.
Also the opening of this reminded me of a short essay a friend of mine published some years ago about the thinnest fingernail of a crescent moon ever recorded seen. I'm not explaining that well but it was a beautiful piece of writing.
Thank you for the best caregiver blog.