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.

Look back in anger

No pictures this time, just my thoughts.

I am so angry right now and about so many things. About the health visitor who told me the reason Isi was losing weight when she was a baby was my fault and I (and I quote) needed to feed her properly (I was by the way). About the opthamologist who we were referred to when, at 5 weeks old, we noticed that Isi had nystagmus who told us over several visits it was nothing to worry about and Isi might just need glasses and sit near the front of the class when she went to school. That's it, no investigation as to why (and I have since found out that nystagmus should always, ALWAYS be investigated as one of the main causes is - guess what - a brain tumour). The oncologist who said that Isi's tumour was benign and treatable and there was no reason why she shouldn't live a reasonable lifespan.

But mostly, I'm angry at me because I let her die. I listened to people who I thought know better, I took their word on trust and believed them, and I didn't fight. A mother's love should be fierce and protective and mine wasn't. I let Isi down. I hate myself.

Too long

I haven't written on here for far too long. I find it painful to do because it reminds me how much I miss Isi. Also, most of my thoughts are the bad ones - cutting a lock of her hair to keep when she was in the mortuary, her telling me she was scared on the morning of the operation and me saying (lying) that it would be alright, memories of her funeral when I left after the service only to go straight back into the room after everyone else had left to find that they had already taken her coffin away. There are worse ones too, but you get the idea.

For the last few weeks I have been trying to busy myself with just about anything else (even housework!) and trying to push thoughts of Isi away. I know how horrible that sounds, like I don't care or I've forgotten. And I haven't forgotten - how could I? - but the nothingness of not actively remembering was, I thought, better. I was so wrong.  Isi deserves to be remembered.

So here are just some rambling incoherent musings that focus on her life rather than her death. One of her 'things' was dressing up, so ...

With rings on my fingers 

Isi loved rings and jewellery in general. She would find a favourite thing and insist on wearing it day and night. Thankfully her school indulged her, even though children weren't supposed to wear jewellery to school.

Sadly only eight rings in this little cheapie packet of plastic rings but she seems happy enough with the effect.

And shoes on my toes!


And the adornment didn't stop at rings - oh no. Shoes were another favourite. Because she had a problem with her feet she had these hugely expensive handmade orthopedic books that she wore most of the time, and she put up with them. But her real love was normal shoes. And not just to fit her - any old shoes would do.

Rachael's boots are good, but are Alex's better?

No, definitely Rachael's!

Socks


Well you've already seen the socks!

Scarves


This is a scarf that one of the chemo nurses knitted for Isi - very tactile and she loved it. You can see she had lost some of her hair from the chemo - honest, it wasn't just a bad mum cut!

And finally, a great big smile, whatever the occasion!

I may not always show it well, but I love you so much Isi.

Mummy

No one calls me mummy anymore. My other two girls call me mum, but only Isi called me mummy.

Today has been an odd day. For one thing it's the 19th and it's the end of the week that I always find the most difficult of each month. Isi died on the 12th September, her funeral was on the 17th and what should have been her 7th birthday was on the 19th September. So now those dates always make me feel really down in every month, not just September.

For another,  I've been feeling very unneeded today. My girls are growing up and are becoming so much more independent (this is a good thing but, like many mothers, I have mixed feeling about it).  They don't want help with homework and they don't need me to do things for them to get ready for school or anything. Neiher of them even seem to want to play much tonight. Steve isn't here and hasn't called so he's obviously not needed to talk to me desperately. And whilst I've tried to fill my day with things I have felt that it doesn't really matter whether I do them or not because no-one will notice or care.

And Isi, you know she was so dependent and so attached to me that she always cared what I was doing. I used to complain about it sometimes - how I couldn't get anything done on my own, how she was always there - and it could be irritating sometimes. But now, I miss it so much, I miss that importance I had in someone else's life and I still miss her so much.

So here is a video from the local Fete du Pain (bread festival). All the kids there let helium balloons off at the same time and I was trying to film it, but you can hear in the background that little voice, calling for me and needing me there.

No one needs me like you did Isi and no one calls my mummy anymore. I miss that and I miss you.

Hands

Isi used her hands so much and not just the usual things that everyone uses their hands for.

For one thing she read. Now Isi, being blind, couldn't read a book in the same way that I do, but she learnt Braille very quickly at school and would whizz through her work. I remember sitting there with her and her homework (and it was always homework for me too as I was learning Braille with her) and, for some bizarre reason, she would have favourite letters. It started out with the letter I, then E then U, and she would scan through her lines, running her fingertips over the letters searching for her number one letter of the moment. I would be there trying to persuade her that we had to do all the letters but no, to her it was a game of hunt the vowel.

So, here is Isi reading with her hands. I always found it amazing to watch - she had such sensitive fingers that she would breeze over the letters in no time at all.

And she could tell things apart by the smallest of physical differences. Try it yourself - close your eyes and try to tell two very similar things apart - it's really hard but she could do it. Her hands were amazing.

So why am I thinking about hands in particular? Because at the moment I cannot get a specific memory out of my head. It was when we were in the hospital just a few days after her last operation. She was unconscious but moved her hand, so softly and gently but it definitely moved, and the doctors and nurses there all told me that was a positive sign. Sadly it wasn't, but I can't stop thinking about that small movement and what it meant. Was she in pain? Was she trying to fight her way back? Was she saying goodbye? I just don't know. The worst part of it is I think that was the last time I ever knew my daughter was alive. I have an official date of death, but that was called after a number of tests and scans showed no signs of brain activity due to massive arterial collapse and I really don't know for sure when she left us. But I do know she was alive with that small gesture with her hand and whatever it meant, and however hard it is to think about it, I am grateful for that small extra communication.

Isi, your hands were amazing. I miss your touch.

Lost and Found

Whilst searching for something this morning, I found some old photos of Isi. These are photos of Isi as a little baby which I thought had been lost when we moved to France after she was born.

I really don't know what I feel. Happy, I think, that I have more photos, but also so shocked because I wasn't expecting them. And saddened too by looking at her little face, so tiny and helpless and yet so full of possibilities now denied.

But it did make me think. Isi battled with her brain tumour for most of her short, short life, and as a consequence, most of my memories are of her with the tumour. It had such an impact on her life - the times spent in hospital, her loss of sight, the special school, her smaller than average size - I feel I could go on forever with the list of its effects. And yet there was a time before her tumour was diagnosed when she was just a normal little baby girl. So very special to us of course, but just another baby as far as the rest of the world was concerned.

So here are just three of the formerly lost, but now found photos.

The first is of me and Isi just cuddling. We used to do that a lot, and I would sit and just watch her, feeling her warm body and inhaling that fresh baby smell. Even as she got older, she would still love to take her afternoon nap on me. There is some damage to the photo but until I get reprints or get busy with Photoshop it will do.

The second picture is Isi lying on her sister Rachael. This picture made me smile - the expression on Isi's face seems to say "oi, that's mine"! There is (was?) just under two years age difference between Rachael and Isi, so they were always closer than Isi and her eldest sister, Alex, who is six years older.

And this one, you can see her looking around with interest and curiosity and it made me remember that once she was able to see (she lost her sight by 18 months old).

Finding these photos brings back memories of when everything was possible, before the tumour took it all away.

So much has been lost.