I’m delighted to report that every day since her latest spell in the hospital, my Girl’s abscessed needle sites have improved and she’s gotten better and better. Of course, there are pros and cons to moving forward. Aren’t there always? However:
On the One Hand:She’s singing again. As I write this, she’s very appropriately bellowing out Tom Petty’s, I Won’t Back Down.
She can tell me when she’s in pain. That means I can do something meaningful about it. No guesswork … or at least, minimal guesswork.
She smiles. I cannot express how wonderful that is.
She can hold her sipper cup, and drink by herself. She has tremors, but she can get the spout to her mouth, and finish an entire drink without help. A far cry from having to administer liquids by dropper or straw.
With an acceptable level of spatter and particulate spread, she can eat a sandwich. It requires some damage control, and a change of bedding, but it’s forward momentum.
She’s meowing. Yes, when my girl is happy, she doesn’t purr, she meows. It’s gorgeous.
I can get her into her wheelchair and move her short distances.
As a result of the wheelchair reintroduction, she’s going to her program. She’s only attending for a couple of hours a day, but it’s another step forward.
I can toilet her. The wheelchair also means I can get her to the toilet, and that reduces …well, cleanup.
All the above brings us close to the return of normality. It does not always go according to plan.
The toileting routine, for example. It’s not perfect. But it goes like this:
I begin by swivelling the Girl in her bed, with her legs over the edge. Next, I sit her up, let her get her bearings. After being horizontal for so long, her brain isn’t used to be vertical. It takes a while to allow her to adjust.
When she’s ready, I crouch low, my arms around her (avoiding the wound sites), her arms around me, and I lift. We quickly swivel her on her feet, and sit her in her waiting wheelchair.
I wheel her to the bathroom. Experience has taught me to take great care not to whack her elbows on the doorframe. (The whacking, however gentle, produces screams that are often far out of proportion to the whack)
At the toilet, I take the footplates off the chair, place a pillow on back of the toilet, release the tabs on the diaper, and repeat the stand and swivel. To return, we repeat the process in reverse.
Sometimes it goes badly. Like this morning.
We do the swivel from the bed. She’s a little unsure, so there’s a squeal. I reassure her that I’m holding her, that I won’t let her go. She gets to her feet, swivels easily to the waiting wheelchair.
We do the bathroom run, sans elbow-whacking. I’ve even remembered to take off her socks so she doesn’t slip on the floor—also learnt from previous ear-shattering experience.
The return is not so great. Despite the socklessness, she swivels, loses her confidence. I have both arms around her, but she’s screaming, “Fall, fall.” I’m saying, “I’ve got you. You won’t fall.”
She doesn’t believe me. She screams at the top of her lungs. Her mouth just happens to be two centimetres from my left ear. She screams again. I yell, “I said I’ve got you. Now turn! TURN!”
She’s not turning. She’s screaming, and now she’s gone “boneless.” Still yowling at a glass-shattering pitch, she slithers out of my grasp, and slides to the floor. It’s like trying to hold a 36kg beach ball wrapped in cellophane. Go ahead, picture that.
I’m still yelling, “I’ve got you, I’ve got you!” Which patently isn’t true. We’re now wedged between the wheelchair and the toilet. It’s a gap of around one square meter. If that. She’s flopped against the wheelchair with her legs between my feet.
I can’t move the chair. It has to be positioned to take her. I can’t turn around. Getting her up off the floor and back into the chair necessitates a dead-lift of 36kg, straight up. She’s still screaming. I almost get her there, but she arches her back and goes down again. I drag her up, screaming reassuring words at her. This time, I poise her on the edge of the chair but she’s kicking out, deliberately sliding back off the edge of the chair so she can make her point that I’m not in control of this situation, and proving that she can slip back onto the floor anytime. I grip her upper arms, and round the chair, and just as she begins to slide, I wrench her back up onto the seat. I quickly wrap her naps, and a blanket around her, reaffix the footplates, wheel her back to her room. Just as I tuck her back into bed, she looks up at me, and says, “Go to the video store?”
I’m like, “Yeah, sure, that’s really gonna happen.”
Our house now resounds with the words, “Want hot chocolate. Want Smurfs. Go toilet.” It’s accompanied by a loving but hollered reply of, “Gimme a break! I’ve only got two hands!”
I hate to think what the neighbours think.
Baby steps, I keep telling myself. We are getting there. I know it won’t last. I know it’ll only take one minor setback to go back to where we’ve been.
But believe it or now, I’m savouring what we’ve got, while we’ve got it.
And getting help for toileting.