One year on

Today is the anniversary of Isi's death. Except it isn't in one sense, because Isi was already gone before that, we just don't know when exactly. Today is just the day that all the tests and retests came back as showing no brain activity. Today is the day we first said goodbye to our little girl. And today is the day that we made the decision to donate her organs so I want to talk a little about that.

In total we donated organs to five other children. Whenever we can summon up the courage we ask the hospital for updates. As of the latest updates, all five children are still alive and doing well. All are out of hospital and some are back at school. It's very anonymous here, so I don't even know if they are boys or girls, what age or anything. But I hope we made a difference to their lives and those of their families. I realise that a donor organ is never as good or lasts as long as having your own fully functioning organ, and that these children will be on medication for life and will be more susceptible to illness and infection as a result. But it buys time, and it buys hope. That was all we wanted for Isi from her last operation. We didn't get it, but I am thankful that those children did. It doesn't give me any comfort, I would rather those organs were still be used by Isi, but I also know how those parents feel, watching your child struggling with something that makes a normal, healthy life impossible.

So today I'm thinking of Isi a lot, but I'm also trying to think of those children too. I hope their parents cherish the gift that we gave, because it came with the highest price possible for us.

This time last year

I don't post here often enough. I find it so hard - the photos come out and I fall apart. But Isi deserves to be remembered properly, and having sat myself down and given myself a good talking to I am going to try harder.

This time last year was the eve of Isi's last operation, and the last time I got to just be with her, to talk, have baths, play games, just the normal stuff. Of course, it wasn't normal - we were in hospital with nurses popping in all the time, blood tests being done - but for Isi hospital was part of her normality.

These are the last photos I have of her alive and today being the day it is I have been revisiting them. There are many and I wish there were a thousand more. No, I wish she was still here so I could take a thousand more and then some.

This is the day before the operation. Check out the toothless smile! Isi's smile always took up the whole of her face.

 And these are from the morning of the operation. She's all scrubbed and clean (she loved the fact that she had to have so many baths) and she's clutching her favourite doudou of the time. I sometimes wish I still had that doudou but it was cremated with her and it would have felt selfish to keep it. Irrational I know.

In these you can see she's staring to show more worry on her face. These pictures make me so sad.

Even though she's worried at this stage she's still trying to smile.

Although not always succeeding.

I have a few more photos after the operation but I will never put them on here. In those, she's hooked up to wires and tubes and monitors and is so still. It is not how I want to remember her, and it's not how I want other people to remember her. She was my beautiful, smiley, sometimes difficult, willful little girl with the big personality and the huge smile who should still be here, but who also will never leave me.