I'm finding things pretty tough at the moment and to be honest so is the rest of my family.
There's nothing going wrong, nothing has happened, in fact life is as it should be.
However I cannot hide this overwhelming feeling of fear and sadness.
There is no current reason but someone once told me:
The body remembers.
It's a strange concept but like how anniversaries work, a year after a traumatic or memorable experience the body remembers and you start to feel exactly like you did then.
It is scary and strange.
I don't whether this is a good or bad thing but this time last year I didn't know some of the best friends I have now. They know my sister died but they don't know the whole story.
I guess this is my way of helping people understand or helping people currently going through a rough time to feel like they are not alone.
This time last year I was sitting in a hospital room, UCH in London. Enjoying the view of regents park from the window as we had just moved out of intensive care which is a room with four white walls, no windows, no t.v just a bed with an ill little girl.
That little girl was my little sister, Charlotte. She was this little ball of fierce energy. A force to be reckoned with. If she didn't like you, boy did you know it, the amount of times we'd get "get well soon" cards from people she didn't like and have to rip them up and throw them in the bin. That was just who she was.
She didn't care for people who made her unhappy, people who let her down basically people who didn't deserve to be part of her life. I always thought she was just rude but now I think of it I actually admire her for it.
Our family would take it in turns to travel up to London to be with her. We had been lucky enough to have a room next to the hospital so we could stay over night and stay for a few days at a time. I'd sit with her, colour in, do her nails, watch chick flicks and of course her favourite thing- talk about boys.
She was a typical teenage girl at heart but sadly her body just wasn't strong enough anymore.
She was having internal bleeding and part of her stomach had died. We were told she had at most 2 weeks to live.
The thing is, Charlotte lived on hope. She was such a fighter we didn't want to take that away from her. We decided as a family it was best not to tell her but moved her to Demelza house a hospice for children where she had been before for respite.
Charlotte loved it there. Especially after spending 6 months stuck in a hospital bed.
She was obsessed with food which was strange as she couldn't really eat. She was fed via a gastronomy which is a tube that puts nutrition straight into her stomach as she couldn't digest enough orally.
Some people has suggested her love of cooking and tasting could be to make up for this, as she couldn't eat but still wanted to be part of it.
She'd stay up to the early hours of the morning watching cooking videos on youtube in the teenage room and cutting flowers into apples. I always found it weird how she could spend so long doing the same thing but she loved it so I never questioned it. I'd just sit by her side trying to study taken a break every 5 minutes so she could sign to me.
My parents had asked if I could try get her into a better sleeping routine whilst I was there as when they'd go visit her she'd be asleep but then wide awake in the evenings when they'd left. It had reached 11 o'clock so I signed for her it was time for bed. She reluctantly shut down the computer and made her way back to the room.
I could see she was tired she was basically falling asleep in her wheelchair. I told her it was time to go to bed and she got so moody (which wasn't unusual) told me to go away. I explained it was important she was awake tomorrow for when she had visitors. She went off in a rant, signing so quick that I could make out would she was saying and avoiding eye contact with me.
I finally got her into the bed but she was sitting up with her arms crossed, still avoiding eye contact. Frowning and shaking her head. I then caught her eye and saw that they were watering.
"What's wrong"
"I don't want to go to sleep, I'm scared"
Tears began to fall down her face.
"Why?"
"I know I'm dying, I'm scared to go to sleep"
All this time we were trying to protect her from her inevitable fate but she knew all along. Completely shocked by this response and trying to hold back my own tears, I replied.
"Don't be scared, I'll stay right here and hold your hand as you sleep"
She nodded, laid down, closed her eyes and cried herself to sleep.
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This is all I can write now. This is going to be a lot longer that originally planned.
I think the thing I learned from this particular experience is whilst you may feel you're not brave. When the time comes and someone needs you, you'll find you're stronger than you think.
Serious blog love
xxx
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