(The picture above is NOT the one Angelic Daughter drew, but a slightly similar, professional, royalty-free image from Pixabay).
Yesterday, for the first time since Mike died, Angelic Daughter drew a picture of just the two of us, standing in front of our house, with the sun in the sky and flowers at our feet. That’s her standard family portrait, with details like her curly hair rendered in bright orange (which it was when she was a baby) and my round glasses sitting prominently across my face.
In the past, that standard portrait always included Mike, with brown hair and glasses, and everyone’s arms upraised in the “gimme a hug!” gesture she used when she was a toddler.
Now her picture showed just us two, smiling, with arms stretched out to our sides. I’m not sure whether to feel hopeful or heartbroken. Mike is no longer in the picture. But it’s a happy picture, so that’s good, right?
I’ve been struggling to help her understand that it’s OK to be happy, that her Dad would want her to be happy and to have a good and fulfilling life, and that I want that for her too. I’ve also been grappling with the necessity of explaining to her that I’m going to keep getting older, and eventually there will be things I can’t do for her anymore, and that someday, I won’t be here at all.
That’s when her tears and anxious dreams and acting out get bad. That’s when the crushing guilt and self-doubt about how selfish I am and about how I’m being too harsh about it and not compassionate and gentle enough about it finds me sobbing and flogging myself and questioning everything about how I’m going about all this. That’s when I go to bed begging God for help and forgiveness and a good sleep for her tonight and a better day for us both tomorrow. Those things make up the hard part I wrote about last July, a few months after I retired.
But I truly believe that the most compassionate thing I can do for her, my only child, whom I love beyond everything in the world, is to help her detach from me now so she knows she can do it. And selfishly, I need to know that she’ll be OK, and have the support she needs once I’m gone, and I need to have a hand in getting all that set up and running smoothly long before I sink into decrepitude. No way I’m leaving those arrangements to people who don’t know and love her.
I think the cruelest thing would be for me to leave her unprepared for my inevitable demise, and, when I do kick the bucket, to leave her stranded, with no choice but to accept whatever living arrangements can be made for her, with support from people she doesn’t know and who don’t understand her.
But one day at a time, one step at a time, has been working for us so far. It’s often three steps up and two steps back, but that’s still progress.
I view that portrait of just the two of us, both smiling, as progress.
She turns 30 next week.
Suffering from the vapors and looking for my fainting couch, I remain,
Your wondering-if-there-is-really-any-such-thing-as-smelling-salts-anymore-and-making-sure-I-tell-Angelic-Daughter-I-love-her-no-matter-what-every-time-I-leave-the-house-even-for-just-a-few-minutes,
Ridiculouswoman
It is right and noble work you are doing. It is hard to both be the mother and the advocate for independence from you, holding your own ego intact and being the ego anchor for your daughter at the same time. Especially with the slash and burn threats in the unfortunate reality we are currently experiencing. My daughter is savvy enough to know that Medicare is likely to be under the gun just on the cusp of her getting major shoulder surgery for the second time for the 20th? time her shoulder dislocated whenever she has a break through seizure despite mostly successful medications. She asked me, “What happens if Medicare pays for my initial surgery but not the next visit and the follow up after that and…” I sigh and say “Let’s take one step at a time. You haven’t had the surgery just yet.” I am too disabled myself to be with her and I am beyond grateful that she is in a decent supportive program in NY state that must also be holding its breath as to their continued funding. Lots of love and prayers for all moms and and dads our sons and daughters that are not the least among us requiring ongoing help to live….
Thanks, Judi! Always a comfort to read your wise words! He Who Must Not Be Named has promised not to touch Medicare or Medicaid, but he clearly has no clue what Muskox-in-the-china-shop is doing, and Muskox clearly has no idea what he’s doing or his teenage twerps are doing either,so we’ll see. Personally I’m looking forward to watching the Republicans tear each other to shreds over the budget -stay tuned! But in the meantime we carry on, caring for the ones we love – as McCartney sang, in the end the love you take is equal to the love you make – maybe that’s why the Ochre Oger is so mean!
My friend has an autistic daughter who just turned 30. She’s somewhat verbal but not entirely independent either. Friend worked with the state and county to find services her daughter. While I can’t remember the name of the organization, there was a lovely group home that she was placed in. It’s only five women, each have their own room, plus there’s a common area and kitchen. The women all have to help out doing whatever they can to the best of their abilities. Two full-time caretakers live with them. Friend’s daughter is very happy there. It took some time, but in the end, the daughter is really proud of herself that she can live independently (somewhat) and contribute to the household. I’m wondering if there’s someplace like that around where you live.
We’ll start looking! Not sure a group home will work, as Angelic Daughter is very 1:1, not great at sharing territory. Do I remember correctly that you’re in Illinois? If so please email me info, if you have it, on what agency your friend worked with – or ask your friend to connect with me if they’re willing! Thanks!
Unfortunately, I live in New York State, in the Hudson Valley. But I can find out what agency she uses to at least give you some idea what she experienced. This way you can look it up and have some point of reference. She just left for vacation, but when she comes back (in a week), I’ll ask her. If you don’t hear from me, remind me!
And I made the above comment – don’t know why it didn’t credit me!
No worries – we have a state-contracted agency that looks out for us – glad to know it worked out for your friend’s daughter