A little voice cries out in the half darkness

‘Mummy.  Mummmm-meeeeeeee.  MUUUUUMMMMMEEEEEEEEEEEEE’

I roll my eyes and curse.  It’s 2.15am and I’ve had precisely 10 minutes’ sleep since the last request.  And before that, she was awake for a whole hour.  And soon there’ll be the night time obs: torch shone in eye, blood pressure cuff – who could sleep through that?

I lie still, hoping that whatever request is coming, it’ll naturally resolve itself without me having to move.  Again.  For the 2,367th time that night.

‘I need a wee’

I jump out of bed.

I didn’t imagine I’d ever feel this way, not after the awful, awful terror and fear that gripped us when Clover was admitted to hospital two weeks ago with sudden and creeping paralysis after a viral illness.  I was so, so scared of what might happen to her, and knew whatever she had, that it was very serious.  Guillain Barre Sydrome has been diagnosed with almost 100% certainty now and thankfully she’s improving each day.  There’s a very good chance she’ll walk again and maybe even recover fully over time, which we’re so relieved about.

The horrible nerve conduction studies which confirm damage to the nervous system typical of Guillain Barre Syndrome

But the relentless routine of staying with her in a hospital in another city while we have a young baby who needs to be at home has tested us.  Home is a temporary stopover, with each of us alternating a night at the hospital, then one at home with baby Marigold.  We all spend time together in Clover’s hospital room during the day, then there’s a dash home with Marigold in order to beat the rush hour traffic and her screaming tiredness.

Whoever stays at the hospital gets the crappy guest bed (I’ve made it a little more tolerable with a duvet and a memory foam mattress topper is in the post!) plus a hellish night of interrupted sleep with the endless requests which continue throughout the day too.  It’s a good indication of her continued recovery though: initially everything was pain and discomfort, with requests to turn her and make sure that nothing, ever, ever touched her legs.  Her voice is getting clearer again, she can turn herself and tolerate stuff touching her and requests now tend to revolve around being taken places (playroom is popular, along with general escapes from the hospital entirely), doing sticker books and going to the loo.

It isn’t much like this, you know (Mother and Child by Laura Muntz-Lyall)

The physio sessions have continued and they tend to be integrated with play sessions as the staff (physios and play specialists) try to discover what will motivate her: yesterday she reached upwards for giant bubbles being blown above her head and today she sat upright in an ordinary chair and made some cakes.   The group music therapy session didn’t go so well: she isn’t keen in joining groups of people she doesn’t know and once the singing (with tambourine) started, she yelled and yelled until we hastily wheeled her outside again.

Reaching for (and sometimes just staring at) bubbles in the playroom
Sitting upright independently to make cakes today
The proper wheelchair arrived a couple of days ago – soon we hope to venture outside with it

Marigold spends three days a week at nursery during the week then comes in on the remaining days.  We’ve tried to keep her routine as close to normal as possible but I feel so awful when I pick her up at nursery as it’s often two whole days since she saw me last.  The play areas are a godsend when she spends time at the hospital as it’s a bit of a challenge keeping her amused and Clover’s room becomes like a pressure cooker as the day wears on.

Every morning when she wakes up,  she looks for her big sister
Causing havoc in the sensory room!

I don’t know when anything resembling normal life will resume; in fact, I can’t really remember much about what normal life entails.  But when I’m home, I do try very hard to spend a little time doing ‘normal’ things: this week I had a long-overdue haircut and have visited the allotment to oversee half a ton of manure being dumped into the raised beds.  I also sew lots: I had just started up a small business making cushion covers when Clover fell ill.  At first it seemed unthinkable to continue but my return to corporate life is going to be on hold for some time now and this is something I can do in the evenings or whenever I find the time, so most evenings when I’m home, I spend a little time cutting fabric, ironing zips (they really do need to be ironed) and sewing at the kitchen table.

Both tedious and satisfying: an evening spent sewing concealed (and perfectly ironed) zips
Clover on the allotment last year.  I’m determined to keep it going for when she comes out of hospital

As well as being grateful for Clover’s first steps towards full health, we’re also extremely thankful for everyone’s support: the well wishes, phone calls, cards, presents, food, hugs, offers of prayers, hand holds and everything else which has made our lives easier during Clover’s illness.  I’ll leave you with a few more photos of her recent days in hospital, doing her best to get better and resume normal life.

Chocolate ice cream – most of it went in
Her beloved mermaid costume
A true test of neurological sensitivity – a sparkly, synthetic Elsa costume!
One of the biggest achievements this week – getting her poor matted hair untangled.  For days we couldn’t go near it as she was too poorly.  I now brush it every few hours!