One of the very best things about Little Fish's Little Wheelchair
is that it enables her to reach the floor. She drops something, she picks it up. Doesn't matter whether it's accidental or deliberate; if something she needs is on the floor then she can fetch it for herself just like any other child her age .
And now Little Fish is in her Larger Chair
and her fingers finish a good 18" off the floor. And she's good and cross about much of life. And is swiping everything off the tables, out of drawers and cupboards and off work surfaces. Frustration at being immobile and 75 puzzle pieces are scattered across the floor. Fury if I spend time with Mog, and three plates, a jug of gravy, and a handful of dirty cutlery is flung to the far corners of the room. Anger at her inability to turn corners without help, and the DVD player goes flying. Hair bands are pulled out (hers and Mog's), cat food is shaken out, toys are shattered and drinks are puddled.
And I'm at a loss. I get that she's cross, bored, out of sorts, unhappy. That doesn't give her a free pass though. She's fine (mostly!) when we have company, delightful when we go other places. This tells me she has this under control; it's a choice not a compulsion. So normally I'd pass her a cloth to mop with or a bag to sort with. I can't even put her down on the floor to pick up the pieces; on her back she's immobile and on her front she's too mobile for this stage of healing. All I can do at the moment (except save on lighting bills by becoming incandescent with fury myself) is ignore her totally and obviously whilst I clean things up myself. "Throw it and you lose it" is all very well but now she's banging her head against her wheelchair, hitting herself with a fork (having already flung the spaghetti), and absolutely beside herself.
So I pick her up and hold her to me, we snuggle together as she grinds her bony head into my collarbone and storms out her fury. And then she screams until she is sick, and then she wants cuddles, and then two minutes later it all starts again, and all because I have stood up for two minutes to do something other than be the sole focus of her attention.
I get loud; she gets louder.
I get quiet, she stays loud.
I ignore her, she escalates; unstrapping herself and trying to throw herself out of her wheelchair or else undoing the straps of her brace and trying to remove it.
I hold her, she bruises me.
I stay calm, she weeps buckets.
I get angry, she weeps buckets.
She wants the Wahooligan's toys, she wants to throw the Wahooligan's toys. She wants my phone, she wants to throw my phone. She wants food, she wants to throw it and crumble it and smear it across her face and up her arms. She wants paints and pens and pencils, she covers her arms and her face and her clothing and ignores the paper. She wants to watch DVDs, she wants to bend and snap the DVDs.
This had better end when her brace comes off.
I have no idea when that will be; I phoned the surgeon's secretary last week and she told me it definitely won't be just six weeks, might be seven weeks or possibly eight, she has a date in mind but can't be certain yet so won't pass it on. I did mention I really need to know, especially if it involves another overnight stay, which it may, but she was unable to even hint. At this rate I might just take the brace off myself and take our chances. At least without it I could sling her in a bath and let her take her rage out slapping water against the walls and sending bubbles flying across the room.
I am so weary of the "I wanna be in the playroom in the sitting room in the playroom in the sitting room you push me I DO IT you doit IdoityoudoitIdoitwaaaaaaaaAAAAAAAAAHHHHH".
Still, she's eating again, she isn't sick despite her best efforts (earlier this afternoon "I wanna sucky Mumma [muslin rag]" Oh - you want to suck it? "No I wanna sicky on it". She tried but failed).
We have carers here for her twice a day at the moment; much needed, much appreciated. But mostly convinced, I am sure, that I am far too strict. We have had another 48 hours in hospital, another 2 days when every lip wobble has been met with new toys and cuddles and comforts, and where I have been the evil one for daring to brush hair or suggest that necessary treatments will have to go ahead whether or not she actually enjoys them at the time. And the changes in routine mean we are back to hypervigilance, back to "what you doin? Why? what you doin?", back to not being able to focus on anything without knowing exactly where I am and why ever moment of the day, needing a run down on anything I might have done without her and a big worry about anything I might be about to do which doesn't include her, back to one eye following me at all times, one ear listening out even in her sleep.
And so I hold her, but she is heavy and awkward in her brace, and wants instead to sit in her chair and hang off the corner of my tshirt, one hand tangled in my clothes always and one giant wheelchair dragging behind me wherever I go. And rages when she can't.
It gets better, right?