Tuesday, 15 June 2010


Mog's in Helen House. Two new medicines for her to try over the next three days, a third for us to think about as a new back up when necessary. I left her shouting "yes" (or hanging her tongue out as far as she could get it whilst flat on her back in bed, anyway) both at the idea of trying something new to help the spasms and at the thought of not having to bend in the middle unless she wants to for the next couple of days. I hope it helps.

Little Fish is in bed, and I am at a loose end. I just went into the kitchen, saw the drugs cupboard and realised I hadn't drawn up Mog's meds. Went to do so, then remembered I didn't need to. Came back, sat down, and realised I couldn't see the SATs monitor. Went to shift the clutter, and couldn't hear the clatter of her lights nor the hum of her music. And then remembered she wasn't here. The sitting room looks twice as large without her chairs, the cupboard looks bare without her meds, and I keep hopping up because I can't hear her CPAP either.

Sitting here earlier, I was getting cross because her carers were so late. Then realised we didn't need them. Got Little Fish into bed, and she was disconcerted because she couldn't kiss Mog goodnight. Came back into the sitting room and turned around to do my usual "Phew, that's your noisy sister settled, what shall we do now?" whitter, and realised I was addressing an empty room.

It is good that Mog is in Helen House. The wheelchair service called back today, confirming that the end of July is the earliest they can possibly do anything at all about providing a more comfortable seat for Mog, and even that will just be an assessment, any new chair will then have to be ordered. She might have something for September, if we're lucky, and the proposed option does work. When we saw them back in May this appointment was supposed to be a back up, this probably won't work but let's look at it to dismiss it but carry on with a different change at the same time, thing. And which has now turned into an oh, we don't want to book the thing which we thought was more likely to help until we've dismissed this, thing. So, for three days, Mog won't have to sit in the chair she used to love but which now makes her so uncomfortable she sobs at the thought. And that's three days closer to the temporary stop gap, won't be ideal but will be better than this, buggy we've ordered.

It's good too that the palliative care doctor can review Mog and suggest some medicines which might help. It's great that she will be able to be monitored and within reach of specialist help should there be any unforeseen problems with them. And it's good that her pain will be kept under control. I'm not sure I needed to be given a leaflet to start to fill in, giving details of my plans for her funeral (amongst other, more immediately useful care planning considerations). But it's good to be able to think about these things sometimes.

It's great that I now have another week's grace before having to clone myself - I can collect Little Fish without worrying about the bus. And it would be lovely to spend time with Little Fish doing things she likes to do, and which Mog finds difficult, except that what LF actually wants to do is play with Mog.

It's nice to be able to open and shut doors without apologising for causing a seizure. It's good to be able to sit and not think I should be going to bed, grabbing sleep in case she needs me in the night.

But you know what? It's too quiet. Mog might not be the gobby one, and her machines might be substantially quieter than those of her little sister, but I miss the little noises that tell me Mog's alive and all's well with her world. I miss the creak of her footplates as she shuffles her feet against them when she's got something to say. I miss seeing her out of the corner of my eye , watching half her face respond to something whilst the other half stays utterly impassive. I miss watching her grin, pause for a fit, then grin again. And I miss her huff of breath as she sets herself up to say yes.

I'm deeply thankful that I'm not as tired as I was last time she went. But now I'm awake enough to miss her. Will they think to uncurl her toes, and will they know to squeeze the big one gently when they do? Will they remember to wipe her eyes, and will they spot that wobbly tooth when they brush her teeth? I didn't specify which music she likes at bed time, will she be able to let them know? Will they read her?

Once again I'm blown away by the trust people placed in me, when I worked in a boarding school, and then when I did respite care. I never really appreciated what a huge undertaking it was to let others take over for a while. She'll be fine. I left her happy and excited. Things won't be done the way I'd do them, but they will be done, she will be safe, and on the whole I suspect people would prefer her to be happy and have fun than to be miserable and bored. Little Fish won't be missing any school, and I won't be tearing my hair out trying to be in two places at once. Whether or not Mog can sit in her chair, she'll spend time with the teacher at the hospice, she'll have physio and all the other bits and pieces she's missing out on by not managing to get to school.

But I'd still quite like to scoop her up and plonk her back in her bed here, back in the bedroom next door to mine, where I can hear her bang on her bed when she's fitting, and hear her quiet happy sighs when she isn't, and where I can watch her chest softly rise and fall as she settles into sweet sleep.

A Little Fish-ism from earlier.
"Mumma, Mum, Mummy, we 'ad a baby in our classroom today. Baby Max"
"Did you? Did you hold him?"
"No, 'e was Frankie's brother and 'e did be in our class today"
"Did you stroke him?"
"No! MUMMA! 'E is a Baby, not a Cat."

I'll consider myself told!


Karen said...

Sarah can help with the cloning issue once she is back from America (26th June) for the rest of this term if it helps K

MOM2_4 said...

Praying the new meds will help!

Yesterday I had several, "OH, no! I need to..." moments and then realized Josh was at school, I needn't worry. Not at all sure why yesterday was so full of these. It is strange when these hit you. Glad Mog is at HH and you can have a bit of a break. Glad she will have the extras that HH provides, but I know you miss her, too.

Thanks too for putting your thoughts down on how Mog's care will be different, but still OK. We are going on an over night trip for our anniversary and all these thoughts keep running through my mind. We have not left Josh for any length of time in 5 years, so my mind is clogged with all the what ifs. I appreciate your thoughts and knowing that she will be fine. It helps me realize the same is true here.

Hugs & prayers,

Yvonne said...

Lullaby for Tia:

Sleep Mummy, sleep.
I'm all right
I've got carers through the night
Get your rest
Go to sleep
I'll be back in just one week
Kiss Little Fish good night from me
Sleep well Mummy, peacefully.

(((tia))) I'm off to sleep now too (baby fed)


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