A little thing with a little thing…

We have a little girl who has a rare little thing called Pyruvate Kinase Deficiency.  It doesn’t sound like such a big thing, just a little deficiency, but it turns out pyruvate kinase is kind of important.  It turns out that if you have red blood cells without it, your spleen breaks them down, and if it breaks down enough of them, you end up anaemic.  So every three or four months or so, our rare little girl, with her rare little thing needs a bit of a top up.  With blood.  Maybe blood from you.

She always says she’s fine, and that she doesn’t need a transfusion, but sometimes when you’re six years old, the fear of the needles just might sway your thinking.  We always ask her if she thinks she’s ready for a transfusion, knowing full well she is, hoping that the day will come when she is able to weigh up the advantages and realise that she does need the blood.

We haven’t gotten there yet.

So this morning we made the decision.  The thing that parents all over the world have to do every day.  To make a choice that your kid will cry and sob and plead for you to change your mind about, but one, that as the parent you know is in your kid’s best interests.  It might be about getting some kind of surgery or medical procedure, it might be about eating vegetables, being home before dark, going to bed at a reasonable time.

Sometimes being parent is fun and easy and things just seem to flow along without incident.

And then sometimes it can be a bit hard.

Sometimes your little girl will look at you with her big blue eyes, her sclera all yellowy-green from the jaundice that heralds the end of this cycle of blood, with tears running down her golden little cheeks, and say, “Please Mummy, can I go to school today? I don’t want to go and get the blood cross-matched.  My haemoglobins are fine.”

And your heart breaks open just a little bit.  Partly because you know you can’t grant her wish of going to school today, like all the other carefree children her age, who right now, might have as their biggest worry whether to take the red or the green handball to play with at little-lunch, but also partly because you know she already knows too much about the workings of a hospital.

But mostly because you know that this is not the last time she will have a transfusion.  She will have them again and again and again.

Hopefully one day it won’t be this hard.

The Red Cross ALWAYS needs blood. They don’t need it one day.  

WE need it today.  

You can call 13 95 96 to make an appointment.

I have a kid, who, by her own admission is the “third smartest” in her class.  She knows this because, “In our class, the first smartest is Shaylah, and the second smartest is Stella.  Then there’s a few other kids, then me.  Third.”

So yeah, she’s nailed that one…

This third-smartest kid has had a big week.

She has an unusual type of anaemia which results in her needing blood transfusions every couple of months or so, and at the moment we are getting close to transfusion time.  So it means that her haemoglobin is somewhere around the point where most adults wouldn’t even be able to get out of bed.

And still she goes on.

You may have heard me whining about the fact that we lost her iPad back here. She had an iPad, not to play Minecraft on (Although you may be forgiven for thinking this was its sole function), but to complete her writing tasks at school, because when you’re knackered, sometimes even pushing the pencil along the little blue lines is a bit too much.

This week she got the ‘Class Member of the Week’ award at school.  Without the iPad (that is presumably still in the loving care of its new owners), and with a good old fashioned pencil and notebook, she wrote “my longest story ever, even longer than my other longest one ever.”

So I guess it was long.

Her award said this:

“Never give up.”

And she doesn’t.  Whilst all the other children her age have long mastered the monkey bars and have moved on to other things, bigger challenges, things higher and faster and more complicated, she goes out every lunchtime, swings, grabs, and gets to the first rung.  And falls.  Then tries again.  And falls.  She has blisters all over her tiny little hands, and bruises all over her knees.  And still she goes on.

Until this week, when she made it all the way.  Just once.  And she was so proud.  I wish you could’ve seen her beam.

You CAN see the blisters

I’m thinking maybe we can all learn something from this third-smartest kid.  Sometimes you don’t have to be the cleverest or the fastest or the most capable.  Sometimes, even though you may be the least-smartest, or the smallest, or the most tired, or the one that things just seem harder for, you can achieve greatness.  If you never give up.

How about you?  Do you give up?

What cool things did your kids achieve this week?

Dear Liam,

First of all, I want to wish you a wonderful birthday.  I hope you love your present, and even more, I hope you love the meaning behind it.  We wanted to get you a grown up present, because we can see how much you want to enter the adult world, and how gracefully you are starting to do so.  We think you are ready.

We have talked about how turning nine is a big year- it’s the start of you really becoming the adult you will one day be.  We have had glimpses of this over the years, and I imagine we will see even more in this year ahead.  We love that we get to watch you.

You came into this world in your own time, you were a surprise to me, and like all surprises, you have been so much more than I ever would have expected.  I remember saying to the Obstetrician at my six week check up that I really liked you.  And as the words were out of my mouth I realised that I was surprised by that, and they were true.  I knew I would love you, but I wasn’t prepared for just how much I would like you.

And of course, what’s not to like?  You are clever and funny and quirky and serious and strong.  You have a great sense of justice and you know just how you like things.  I admire how well you know yourself.  Most of all though, you have a good heart, and that my gorgeous boy, is what will carry you through the days, to become all that you can be.

Thanks for taking my heart, softening it, and placing it on the outside, where everyone can see it.  You have been the making of me.

I love ya mate.

Love, Mum

Happy 9th Liam

Today is my big day at work, so I haven’t seen much of the kids.  Just bit of time together this morning, and a quick goodnight.

After I was all done, I came up to see Coco’s homework on the table.  She had some spelling words to “look, cover, write, check” and sentences of same.  Her writing is slowly getting better, as she seems to be getting less fatigued these days.  She is proud of her achievements, probably because they are so hard won.

It isn’t the neatest writing in the world, but you can see she has tried hard, and the work is all her own.

My favourite, was her sentence for the word ‘breakfast’.  All spidery writing and smudgy from the rubbing out:  “The smorning I had breakfast.”

It made me laugh.

That kid.  She makes me cry more than any person I’ve ever met, but my God she makes me laugh more too.

She’s had a tricky week, but tomorrow is the book week parade, and I know she’ll be up early ready to dress up as Pearlie the Park Fairy.

Keep up the good work Coco, your tenacity makes our hearts sing.

….From The Ashers xx

What about you, what makes your heart sing?

What did you do the smorning?