The word that I have been scared of since Kyd was born.
Kids with Down Syndrome have a higher chance of getting Leukaemia (I won't go into why, the science stuff will take too long, google it) and so it is one of the many things that have been floating around the paranoia level of my parenthood for what seems like forever.
I read posts around this subject a lot about children with and without Downs but non have hit home as much as Tired Mummy of Two's journey with her daughter Elizabeth. I think it is because in the past few months I have gotten to know Laura and her family really well but on Saturday I made a really special visit to the Manchester Children's Hospital (in between setting #BlogOnMOSI up that is).
Elizabeth, 5, who has been fighting Acute Lymphoblastic Leukaemia since 2012, is one of those children who never fail to fascinate me. She is upbeat and happy all the time. She is obsessed with princesses but not the spoilt ones. She laughs in the face of anything painful and she gives the Dr's hell.
She's my kind of girl.
Elizabeth has developed Shingles this week, with probably the most awkward timing ever, what with her mum and dad running a conference for 120 bloggers that weekend, she has been admitted into hospital for 5 days minimum. The thing is, if they'd caught it at the start on visit one not three, all she'd have needed was medication she could take at home, instead she's now hooked up to her 50 millionth IV drip and stuck in the four walls that she might as well call her second home.
This is normal for her though.
This is life for a cancer patient.
She just smiles on and jumps back on the bed... and when I say jump, I mean bounce.
That rash was so obviously giving her pain but she just said 'I'm fine I don't need any pain killers' as she bent over awkwardly with a wince on her face whilst picking something up avoiding the pain getting worse.
I looked at Laura and she looked at me, we knew it was something a little bit more but no, little miss princesspants just smiled and carried on with her princessness.
You don't know how much pain a child that is used to being in pain is really in, until that pain is gone and you see them at full levels of themselves.
I get that.
Kyd, gets that.
Elizabeth is just 1 in millions of children, who GET that.
For these children, the small things matter the most.
Laura said that Elizabeth loved all things girly so I had an idea.
On Saturday, I made my way to the Hospital with Pink Sparkly nail varnish and make up in hand. I princessfied this little princess and put a bit of sparkle on that smile.
As I painted those teeny little nails, toes and all, my whole body filled up with an overwhelming emotion that I can't pinpoint, as I could see just how much she was loving the moment we were currently in. She was laughing and joking and talking all things Frozen and then blowing on her nails to get them dry and at that moment I had to take a deep breath not to cry.
She is so lovely and she has been, and is, going through so much.
I put some eye shadow on her and then found my fairy dust (a pot of sparkle body powder)... it went EVERYWHERE including all over Laura and Joy from Pink Oddy... they loved it! *whistles*.
She wasn't too impressed with my fake eyelashes though as they do look a little like spiders when they're not on my eyes and she asked a very good question...
'Why do you buy eyelashes when you already have them yourself?...'
I had no answer because trying to tell a girl who lost all her beautiful hair not so long ago through Chemotherapy that they were my way of hiding from the bits of me I don't like and my stupid anxiety... how stupid would that sound. How pathetic I should say.
She just laughed at me when I said
'do you know what?.... I have no idea'.
I left her my old lashes to play with whilst I sprayed her with my perfume and then made her monkey do the zip wire across the room... as you do!
She made my day, week, year just being herself that day. We've come to the conclusion that it might have a little to do with the fact I was desperate for a daughter so I could do that type of stuff with her. Elizabeth has agreed that I can borrow her for that stuff if I want because she loves it and mummy doesn't and I am 100% going to take her up on that.
Speaking of Mummy, do you know what the greatest part of that day was?
Seeing the smile on her face when she saw her mummy walk in the room just in front of us. She stopped mid bed bounce and glowed with love as she walked in the door it made me melt inside.
Oh and in joint best moment... when we walked in on Sunday evening and found Daddy picking glittery nail varnish off his nails!! #Priceless
Get Well Soon Elizabeth aka Princesspants
See You Soon