I kinda lost my shit last night with the Little Angel. He is, of course, adorable and sweet. He doesn’t have a willful bone in his body; his brain is incapable of emotional manipulation. He is utterly guileless.
I know all this. I have been his mother forever (well, his forever) and his number one champion and advocate just as long.
But goddamn it is still an exercise in exhaustion and frustration and and inordinate amount of time to get anything done. It literally took me over ten minutes last night to get his head through the opening of his pajama top and only half his right arm in the sleeve, like a human T-Rex hybrid. Over ten minutes. And I still needed to get the rest of his arm let alone his other arm through.
We don’t know if it’s one of his toxic cocktail (our appellation for his numerous meds) or just his wiggly brain which makes him so giggly. He already has severe hypotonia (think civil disobedience — just floppy, like a 56lb rag doll), and coupled with his giggling and rolling around makes it so freaking difficult to get many of his ADLs (activities of daily living, like dressing, toileting, bathing, feeding, etc.) accomplished.
First I bathed him. He is, naturally, absolutely water unsafe. I prefer to bathe him with me sitting on the edge of the garden tub with my feet in the water. The H.J. finds he gets better traction if he’s in the tub with Little Angel. Last night Little Angel kept flopping face-forward into the six inches of warm water, so of course I kept grabbing and righting him, over and over. It gets old and exhausting, and he’s giggling whilst choking on water. He has no idea what is going on, just that he’s having fun in the water.
I have to lift him into the tub and then out, and I find the out much more taxing: he’s wet and slippery, and I suppose I haven’t yet discovered the proper body mechanics for how to get his bottom on the ledge and then swing a leg over and then the other leg, all while keeping a firm, safe grip on that heavy, slippery, floppy body.
The struggle to put his pajamas on left me feeling ready to crawl into bed. And then he kicked me, hard, in the breast, right in my nipple (of course).
And that’s when I yelled at him what a horrible person he was.
I am not an idiot although sometimes I clearly act idiotic. I know better. I know the Little Angel is not his disability, and that he is not a horrible person, but his disabilities are horrible. But for fuck’s sake, after eight plus years of living with, of tending to these abrasive disabilities it can be hard to keep them separate.
But I felt like a real shit and I spiraled, quickly, downward, so ashamed of myself. So angry with myself. When the H.J. came home I told him what I’d yelled and how horrible I was feeling, and he laughed and opened his computer to play in his mountain biking forum. He doesn’t care. He doesn’t get it.
Hours later when we were in bed I reiterated how deeply disappointed I am with myself and how much I needed my ostensible partner in this to somehow absolve me, and he said “well, go to sleep” and he pulled out his tablet to play whatever his game du jour is. So he’s a bit of a fucker himself.
I hate myself when I lose control like that, when I yell at my children. I hate thinking or saying such hurtful things. While the Little Angel may not understand the words there is no doubt he could understand my tenor. I wish I had a safety net to help me, to give me a break so I didn’t reach that overwhelmed / overtaxed point. Unfortunately that’s not the world in which we live.
I’m not a Catholic but I partially understand their desire to confess. Since the H.J. wouldn’t take me seriously (and I am very, very serious) I feel as if blasting this into the ether will help me take responsibility, ownership, of my odious behavior.