Hard Work: thinking about the nature of care and parenting

Parenting can be hard labour.  I'm feeling that particularly after my alone-time week as a the only present parent to a three year old, a high needs disabled 12 year old, and a teenager.  With DinnerDad sampling the joys of London, Copenhagen and Milan (care of work), I had the Snail during our regular custody week all on my lonesome.  I've done this once before, last month, while our kitchen was installed (fun!).  Other than that, most of DinnerDad's work trips are in "non-kid" weeks, so it's just Lolly, me, (and sometimes, Smash).  So, a week as the only carer for 3 kids, 2 who are still high dependency, has got me thinking about the nature of care, and what parenting is like, and a whole lot of deep shit stuff.

I don't pretend that one week here and there gives me any insight into being a sole parent, because a) my week "on" with Snail and Smash was finished today when they head to school (and after school, to their mother's), and b) DinnerDad is coming back next week, so it's finite.  But I do wanna pause to say - holy crap that was a lot of work!

The Snail

I think it's a combination of two things.  The sheer physical labour of it all: Snail needs pretty much total care, she needs someone to feed her, dress her, transfer her from her chair to the floor/couch/bed etc, bathe her (including getting her into and out of the bath, drying her, cleaning her teeth, dressing her etc etc), change her bum, wipe her face, hold her cup, pull up her blankets, get her in and out of the car, and so on and so forth ad infinituum.  Lolly is getting pretty independent, but is still in the "get me snacks and drinks" and "help me get dressed" stage, and as I've mentioned before, she's not toileting yet (I think this is at least partly because Snail is still in nappies) so there's changing and wiping involved there, too.

Its just tiring, being IT.  Knowing if you don't do it, no one will.  And then your kids will be dirty, unfed and freeze to death (or something).  On this point, having a Snail is very hard (readers with disabled kids will be agreeing right now).  She's heavy.  She doesn't help at all much.  The worse she gets with seizures and meds, the less she can support her own weight, or walk assisted (and I mean, you stand right behind her taking a lot of her weight, and get her legs going by sheer momentuum, guiding them with your own legs if you have to), or transfer into and out of her chair, or bend her knees to sit down, or help you at all when you're changing her bum (like physically having to drag a nappy up onto a 12 year old with no motor control, hard).  So, yeah, it's physically draining work.

Ms Independent

But it's mentally draining, too, and I think this bit is the kicker. There is something about doing all this for someone when they will NEVER be any different that is a tad soul destroying difficult some days.  It's very different from the care I've done for Lolly, who is "normal," and who I know - and can see day by day - that this time for her will end, that there is, dare I say it, a light at the end of the dependency tunnel.  Don't get me wrong, I've loved doing that care for Lolly.  I'll be sad when she's completely independent.  But it's going to end, all things being equal.  Snail never will.  She'll just go on and on needing the same stuff for the rest of her (my) life.  And getting bigger and bigger.  With me getting older and older.  The same stuff.  Forver.  See what I mean about the soul destroying difficult part?  Look not into the abyss and all that.

The second part (of my meandering point) is how lonely being IT it is.  It's lonely.  Us humans need to debrief, to share with others.  In our society we partner up in pairs (usually) to get this need filled.  Not being able to debrief, to release some of the pressure valve, or just to bore someone stupid with the minutiae of your day (where they have to at least pretend to care) makes things harder.  I mean, I've talked to DinnerDad on the phone, and on Skype, but with all the kids going nuts and things being busy, it's just not the same.  It's lonely.  I think, to some extent, being a parent at home is a tad lonely most of the time, even if you have a present partner, to be honest.

Emo Unicorn is depressing.

Look, this entry is kind of depressing.  I think on this stuff a lot: what makes it hard to care for a disabled child?  What is full-time parenting all about?  How do we cope with disability in our lives forevermore?  What effects does it have on us as a family, as individuals?  I don't have the answers, but considering the questions, and considering them in public (given the general silence that exists about disability in our society) is something.  Isn't it?

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