The emails roll in when I don’t write about her much.
Is she okay
we’ve not heard a lot.
I love that you all care for her.
Yes, yes, she’s okay.
She’s been a little sick this last week gone
and woke on Saturday unable to pick her head up from the pillow.
It’s been five weeks since we’ve had a hospital admission -
a record of sorts
and I thought our time was up
but by some grace and good medicine we made it through the weekend.
I can’t find any reason for her high temperatures and her nausea
but I’m worried she has another urinary tract infection.
Hopefully we will have some test results back tomorrow
and an idea of what this is.
I’m just going to be grateful for each day of good though
and today was good.
Life with an immune deficient child is often a gamble.
Do you risk taking your family out when one child is not herself
knowing it might end badly
or do you try to stick with normality for as long as you can.
I’ll choose normality I think -
or at least our form of it.
We went to the local markets, Ivy traveling by shoulder ride.
Her head resting atop her father’s.
It’s lucky he’s strong and accommodating.
and found some amazing things.
It made up for yesterday’s really bad.
We saw the paediatrician when we came back from holidays,
Ivy hopeful of having the nasogastric tube taken out
but she’s still losing weight
and so he said no.
Of course, she was upset
but she told him she understood.
She’s so very stoic.
It seems that tube is part of our normal too.
Am I worried?
but I can only be guided by the girl’s appetite
and the dietician’s plan.
I’m kind of stuck between wanting to feed her every high calorie food I can
and wanting her to balance her foods and make good choices (and eat enough of those to boost her weight).
I may just need to accept that she will always eat like a little sparrow
and sparrows don’t really like too much cake or pudding anyway.
She’s been to school for the last couple of weeks, give or take a few sick days
and practicing for her ballet concert.
Did I tell you she changed dance schools?
When she bounced out of the first class I could tell she was happy.
“It has mirrors Mum and real barres!
This is serious ballet.”
Indeed it is.
So serious in fact that the majority of our November will be committed to it.
I’d forgotten how full on ‘real ballet ‘can be.
I’d forgotten too how much she loves to twirl and leap
and how she loves a good tutu.
She asked me today, as we were gathering some things from the hardware store, if I knew how to pirouette
and so we stood among the metal sheds
where I taught her how to prepare
and push off into a spin, using her arms to propel herself
and how to spot so she didn’t feel dizzy at the end of it all.
She looked me up and down afterwards;
“you’re still good at that” she declared and hugged into my leg.
At the end of each day, it’s the little things that give me the most pleasure
and sometimes you can’t ask for anything more.