In the lead up to Transfusion Day, things get a little tetchy around these parts. People might cry if they don’t get their hot chocolate in their favourite Bunnykins cup, or if the hot chocolate is too hot, too cold, too milky, too chocolatey, stirred too much, not stirred enough, or it is served without a spoon (Bunnykins of course). I can’t even begin to imagine what would happen if it was revealed that it was made with Oat Milk. So the adults do the best we can to make things smooth and easy and not get cross with her for feeling overwhelmed, because we know that she is exhausted.
As are we.
In the lead up to Transfusion Day, I get a little tetchy too. I don’t care much for frivolous conversations, and unless I’m at work, my mind finds a way to wander up and down the long white clickety-click lino corridors of the Children’s Ward, hovering over the stifling walls of the treatment room, where the child who will always be my baby will soon have her golden skin pierced and pierced and pierced until the cool smooth of the needle can slide along the length of a vein.
And so we wait.
We wait until we can avoid it no longer, and we book in for Transfusion Day.
And then something strange happens.
The child who might burst into tears, crying, “Why did Daddy put the salt so far away?” even when it’s directly in front of her, becomes a child transformed. She gives up a sample of blood for crossmatching, and it’s as if we are in Medieval times, and the blood-letting creates a space in her circulation to be filled with vitality. The child who would whimper if she was asked to pick up her socks, will put socks on her hands, in an attempt to do a no-hands cartwheel. She will run and play and laugh and craft. The bursts of energy are short-lived, and her chest will rise and fall in a way that my Motherduck instincts will watch like LASER, but at least there are bursts. She is preparing for her Coco-ness to return.
And so we wait.
We wait with a nervous energy that tries to escape and bubble out of our pores.
She is nervous about getting the canula in, and yet equally excited to open the Glitzy Globes I’ve bought her to play with to pass the long long day, I am nervous about a million different things that will never eventuate, and yet equally excited to have essence of my daughter back, with all of the potential and promise of an eight year old.
So there is a balance.
As always there is at times of transformation.
In the lead up to Transformation Day we are jangly and raw and open, with our hearts exposed to the elements. And yet somehow we are closer to something within us, than we are at any other time: our truth or our life force, or some invisible element that makes us human. I don’t know what it is, but it allows me to look at the world through eyes that have been scrubbed clean of filament, and I can see in razor focus.
It’s a Transformation.
If you read these words and think you might like to share a transformation with a kid like Coco,
call the Blood Bank on 13 14 95 to book a spot. You can be a hero.
…From The Ashers
Hello there! I found your website from the PKD Facebook. Coco, I just had a transfusion last week, and I FEEL GREAT!! I’m a bit older than you, probably more like your mom’s age. I just wanted to drop you a note to say that someone from far away knows a bit about what you are going through!
Katie
Thank you Katie. I’m sorry I hadn’t approved your comment- the blog was full of spam!! I hope you are going well. Ali
Would you believe Alison I just got of the phone before opening this post – I finally did it I have made an appt for this Friday. I felt myself grinning from ear to ear as I hung up te phone knowing I was doing this to help someone else.YOu guys are such in inspiration xx
Thanks so much Louise! We really appreciate it.
ali
Beautifully written. It says it . I hope it all goes smoothly xx