Just 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.
Oh I feel your pain 🙁 My little son has also had to endure more than his fair share of medical procedures. I thought it was hard when he was a helpless little baby but as he gets older and his pleading and attempts to reason out of things get stronger my heart breaks a little more. Love to your family xx
Thanks Michelle.. It sucks a bit, but I guess there’s worse things…
xoxo
Thanks Cath.
xx
Oh Al, I’ve just come on over to hunt down your swimsuit post for a link in my post tomorrow and got lost in this one and the one before. What a brave girl you have there – and she has an equally brave mum. xx
Thanks Nikki,
I’m not sure if we’re brave, but we are lucky to have so many awesome people who donate their blood, and so many wonderful doctors and nurses to take care of us.
PS I love how you say “come on over” like it’s a place.. funny how it becomes like that isn’t it? This feels like my home.. Thanks for visiting…
I love that photo of your two little sweeties, and my heart aches for all of you and Coco. She certainly makes you put the problems in your life into perspective. xoxo
That is her gift to us, without her even realising.
Thanks Sam. I guess it is…. I’m always pleased to find something useful out of this.
No kid should EVER have to know the inner workings of a hospital 🙁 Or have to beg to go to school instead of to get a blood transfusion 🙁 I hope one day – sooner rather than later – these days are easier for both of you. Sending much love. xo
Thank you Aroha… I hope so too.