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.

Doudou

Isi loved teddy bears - her doudous. I mean, really loved them. She took her doudous everywhere - the shops, the hospital, school. Once we accidentally left a doudou at school and only remembered when we were half way home. We raced back and were so relieved to find that her teacher had not only put it somewhere safe but had alerted the whole staff to look out for when (not in case, but when) we came back for it.

Now today it is 6 months since what should have been Isi's 7th birthday. We haven't talked about it much here in the house - it's been somewhat of the elephant in the room so to speak. But it has been really hard for me. I've been thinking a lot about how she would be now, and I think she would still have loved her doudous just as much.

So, the first picture I am sharing is of the gorgeous teddy that my lovely friend Anne sent for Isi for her 7th birthday. Sadly isi never saw it, but we are saving it so that if we ever have grandchildren then we will give it to the first one as a gift from Isi.

It doesn't show in my poor photo but it is so soft and fuzzy and squishy that Isi would have loved it - thank you Anne.

The second thing is Isi with another of her bears. Sorry that it's the wrong way up but I haven't learnt if there's a better way to load videos.

For Isi, as long as she had a doudou she could face the world.

I wish I had a doudou myself.

Countdown

Today was a bad day - it has been six months since Isi died.

I count things down these days - how many weeks has it been, how many days until Steve comes back, how many hours until I can take more painkillers.

Well Isi loved to count in a much nicer way so here she is. Much more fun than my counting!

Cats

We have a few cats due to my soft hearted habit of homing unwanted cats and kittens. As of 2 o'clock this morning we have one less. Doom Kitty (my kids name the cats!) died after falling ill suddenly yesterday afternoon. He was less than 3 years old so this has come as a terrible shock. He was in fine health before so I don't know why he died. I am wondering if perhaps he ate poison (we have a lot of farms around here and I know at least some of them put bait down to kill mice and rats) but I just don't know. I have to tell Isi's sisters this morning and Rachael in particular will be devastated as she adores all the cats.

What does this have to do with Isi? Well, she wasn't keen on all of our cats (sadly, including Doom Kitty) but she did love two of them in particular - Salem and Floppy. Salem she loved because of his loud purr and the way he licked her hand when she stroked him. And Floppy because she was such an easy going cat - never scratched or bit and you could pick her up and play with her like a doll almost!

When we found Doom Kitty, aged about 6 weeks or so, Floppy instantly took to him and behaved like his mum. She would let him suckle for hours, slept with him, played with him, everything that a mother cat would do, except that as a neutered cat she obviously wasn't his mum.  I look at Floppy now and think she has sort of lost her child too.

Anyway, here is Isi with Floppy in Isi's dolls pushchair. What you can't see from this (and I wish I had taken a video) is the half hour before these photos were taken, during which Isi was pushing Floppy around in the buggy. I kid you not, it was for a full 30 minutes that Floppy just say there in the buggy being wheeled around the house. Any normal, sensible cat would have jumped out, but not Floppy - I told you she was easy going. I remember Isi having great fun doing this and the photo shows her giving a little love to Floppy after her long ride.

RIP Isi and now Doom Kitty

My princess

The thoughts I am having at the moment about Isi are some of the hardest to deal with. It's the guilt for all the things I did (or didn't do) that I should have, and the associated regrets. I know it's pointless because you can't go back, but it doesn't stop the dark thoughts coming.

The things that trigger it are the everyday, hard to escape from things. The Disneyland advert that reminds me how much Isi loved the idea of Disney princesses and wanted to go to Disneyland. We promised her we would go after she recovered from her second brain surgery but she never did and now I think, why didn't we just go before her operation. Stupid, stupid, stupid us. We wanted to give her something to look forward to afterwards, another reason to get better, but now it's too late.

In my better moments I think that perhaps she'd have hated the noise, the crowds, the waiting in line, and all the walking about, and maybe it was for the best. More of the time though I think she may have enjoyed it and she would have got to meet her princesses and now that opportunity is lost forever.

Still, she was always my princess, and she outshone all the Disney ones put together.

So here is my princess with her favourite 'crown'! Yes, I know it's a bag but she saw it as her crown and that's what matters!

No light, no light in your bright blue eyes

When I was with Isi after her second operation to remove part of her brain tumour she never opened her eyes again but she had very dry and sore eyes after the operation so the nurses would regularly open her eyes to put various drops and creams in to ease the problem. And each time they did it her eyes would seem lifeless and I could not lose the feeling that she wasn't really with us. And now the image running through my head is of those lifeless eyes after the operation and I can't shake it.

You see, Isi had the most beautiful bright blue eyes (from her dad as mine are brown) that were full of life. People would comment om them - in the supermarket, at the post office, that kind of thing - and at the time I hated that, because she couldn't see but her eyes looked so normal. What do you do when someone says how lovely they look? Just smile sweetly and agree or risk making them uncomfortable by pointing out they didn't work (well, not strictly true - her eyes did but her optic nerve didn't).

Now I'm finding it harder and harder to talk to people, my friends, the people who care about me. And yet in so many ways I look normal. I can make small talk, that's easy, but really talk about how I feel - that's so much harder. And I'm reminded of Isi's eyes - superficially fine but completely non-functioning underneath.

No light, no light.

To sleep, perchance to dream

Today it has been five months since we lost Isi and all I have wanted to do today is sleep the day away. I know it's because of the date but I also know that tomorrow will be much the same. I stopped dreaming for a while after Isi died, well probably not true, but I stopped remembering my dreams at least. But now, they are back and how. My dreams usually are more bizzare and stranger than before (keeping cats in the fridge anyone?!).

But I had a dream recently which involved Isi which was the strangest of all because it was so normal. It was just me and Isi doing stuff, but it wasn't a memory. It was more like a melange of memories - we were at the hospital but cooking a meal (not possible there) and playing with things that we never took to the hospital. And when I woke up, it was the strangest feeling - because it was so normal it felt like extra time so to speak - that perhaps these things had happened and I had had more time with her, even if just one night. It was sad, comforting, unreal and yet so full of emotion. I wonder if my desire to sleep so much is a need to recapture that dream and that feeling, or whether I am just so tired.

Well. I thought of this photo and it made me wonder what Isi may have been dreaming of (and Rachael too!). I'll never know now but I hope it was good.

Snow Days

It's not very often we get snow here in south west France. I think in the seven years I've lived here we've had it twice.

Now, young kids usually love snow - right? Not Isi. Actually, not strictly true. She liked the idea of snow, just not the reality. The concept was good as far as she was concerned - family fun time outside, something different to play with, a construction opportunity (and she did like to build things). The reality was cold hands, wet feet and too many layers of clothing, all of which she disliked (with the notable exception of socks of course!).

This year we have had the longest period of snow that I can remember - it's been ongoing for days now and normally it disappears pretty quickly. Isi's sisters are loving it - no school and lots of building snowmen and pelting mum and dad with snowballs. And it makes me think about what it would have been like with Isi here. I thought there would have been tension between Isi's desire to stay in and her sisters' desire to go out and how someone would have lost out.

So then it made me look at the photos we have of the last time we had snow. I fully expected to see pictures of Alex and Rachael having fun and Isi looking miserable. But instead, I see Rachael helping Isi to find something she liked doing in the snow (emptying buckets of the stuff). I see Isi having fun sweeping away the snow. And I see the ways we found to make her more comfortable by bringing out a chair for her so that she didn't get too wet. I know that there were also whinges from Isi about wet floors and the cold and many changes of clothes to remove any hint of moisture. But it also reminded me that as a family we have always found a way to sort things out. I need that affirmation now more than ever.

Thank you Isi for reminding me that things are not all bad.

Anderssen vs Kieseritzky 1851 (renamed)

Steve loves playing chess and so did Isi. It was her special game with daddy because mummy was, to be frank, rubbish at it. She had a special chess set for the blind and recognised all the pieces instantly by touch. She knew how all the pieces moved and how to play the game, but her favourite way to play was to recreate one of the greatest chess games of all time.

The one she liked best was The Immortal Game between Adolf Anderssen vs Lionel Kieseritsky (1851). I have no idea why that appealed to her in particular but it's considered one of the classics in the chess world and Isi only ever liked the best! Perhaps it was because of the quality of the game, or maybe the boldness of the moves (Isi did like to see a bit of carnage on the board) or perhaps even that mate is achieved in only 22 moves. I don't know why she loved that game so much and now I'll never know why. But here she is playing it anyway, with daddy having to check the moves were right on his laptop. Daddy always let her win and you can see the pleasure on her face when she did.

There's stuff about the original game on Wikipedia here but I prefer to think of this one now as Isi vs Daddy 2011.

Dirty Laugh

At the moment I'm trying to think about Isi's life, basically because it's a lot less painful than thinking about her death. I wish I could remember every day, every moment, but I know I can't.

It's the sounds that get forgotten so easily I think. I can still remember Isi's voice but this morning I thought - I can't remember her laugh. Isi was one for extremes - one minute angry, laughing the next. Nothing was done by halves and her laugh was no exception. Loud, throaty and full bodied - we used to call it her dirty laugh. And here it is.

Oh yes, now I remember!

Isi, no-one laughed like you.

Socks

The lighter side of life with Isi. I have posted a little about how different it is to have a child who is, well, different. Sometimes it's very hard.

But her differences could also make us laugh, and here we get to the socks. Now, Isi loved all footwear - boots, shoes, slippers, socks - the lot. All except the orthopedic boots that she was supposed to wear of course. While sock sorting (and as an aside, why does everyone in this house have to have lots of black socks that are all just subtly different?!) I thought about Isi's love affair with all things foot related.

I have some photos of Isi and what she would like to do with socks. She would go through the bag of mismatched socks (always plenty to chose from there) and put some on her feet. It didn't matter that they weren't hers, that they were far too big (she had tiny feet). Oh no, she had a solution for that. What she needed was more socks. So another pair, well okay not a matching pair, but another two socks would go on. And then another. And another - you get the idea?

So, here is the unique and special Isi guide to wearing socks.

1. Socks do not have to match.

2. If one pair of socks is good, two pairs must be twice as good. Continue until the supply of socks is exhausted.

3. Arrange your socks carefully for maximum effect.

4. Always check your socks before you set off!

5. Multiple socks will make your feet feel bigger and may make walking a little tricky.

6. Be ready to reach out for a helping hand from mummy with your socks.

7. If mummy is laughing too much to take a photo it's time to stop!

Isi, thanks to you socks will never be boring again!

My sister lives on the mantlepiece

Odd title? Not really as it's the title of a book I have just finished reading by Annabel Pitcher. Firstly, I think it's an excellent book. We bought it with the intention of giving it to Isi's sisters to read as it's written from a young child's point of view about the death of his sister. Well, we (me and Steve) decided to read it first to check it out. It's beautifully written but I don't want to implant in their heads that daddy is going to become an alcoholic and I'm going to run off with someone called Nigel, so we may not pass it on!

Anyway, I was thinking of her sisters, and how life has changed for them.

So here is one of my favourite pictures of the three of them.

This was taken in Parthenay at the annual games festival held each July. By the way, it's a great fun event - dedicated to play, they line the streets and the main square with board games and bouncy castles and stuff. What's not to like as far as the kids are concerned!

It's just a snapshot but it really shows the dynamics of their relationship at the time. Alex is in the background, looking quietly appalled as only a bored teenager can do (Alex has been a teenager since about age 8!). Rachael is next, bigger in the picture and acting the comedienne as she so often did (and still does) to get attention. And then there's Isi, the focus of the picture, mouth open as she chatted away to me.

Isi was a demanding girl. Her illness meant that much of my time and attention was taken up with dealing with that - the trips to hospital, physiotherapy, the feeding tube that she had for 2 years, and a load of other things. Then, by sheer force of personality she also demanded (and got) much of my attention. I don't know if it was to make up for not being able to see but she talked all the time, even in her sleep. Then there was the fact that some things took so much longer for her to learn and other things I still had to do for her that I didn't with her sisters at the same age.

Now, I have more time to spend with her sisters. I know they appreciate that but in many ways I resent it. Not because I don't want to spend time with them, far from it. It's more that I worry whether they think it's better now that their sister 'lives on the mantlepiece'.

Places I just don't go to anymore

Today I had to take Steve for a blood test. Which meant I had to go somewhere that I went to a lot until the beginning of September last year but haven't been to since. The lab in Melle is where Isi used to have regular blood tests - usually weekly, occasionally monthly, sometimes several times a week. And it was always me who took her. Always. This is the first time Steve has ever been there and it is the first time I have been since Isi died. And it was hard - all the people who work there knew Isi having regularly poked needles into her for years. I tried to just stay invisible in the waiting room, but they recognised Steve's surname and asked him if he was Isi's dad. We just about got out of there before we started crying, but it was close.

So, it brought back memories of all the times me and Isi used to go there. Actually we shouldn't have even had to go there in theory - Isi had a prescription to have a nurse visit her at home to take the blood samples. The local nurse came once, looked at Isi and told me in no uncertain terms she was NOT going to do that as it was too hard for her. So, off to the lab we went for the start of what would be hundreds of blood tests over her lifetime.

After a few weeks we got into the routine. She would eschew the local anaesthetic patches that she was supposed to put on her arm (she didn't like having them there for the necessary hour beforehand), and we would make sure we always got the same person to do the test. That person (and her successor) I will always be grateful to as they managed to do it both calmly and quickly, thus provoking the absolute minimum of tears (and often none at all). Then, when it was all done, we would make a game of running away and pretend we were never coming back, although we always knew we would be back all too soon. Finally, she would spend the fifteen minute journey back home asking me several times if we could take the plaster off when we got home and as soon as we were through the door it was coat and plaster off and normality was resumed!

Now, I don't have a picture of Isi having blood samples taken (it's just not the sort of thing you feel you should whip your camera out for!) but I do have this picture. This is the magnolia tree that sits in the centre of the lab's tiny car park that we usually had to manoeuvre around, but one day it just looked so lovely that I took a picture. I wish now that Isi was in the picture too but some things can't be undone.

This is just one of the places that I just don't go to anymore.

Smile

Isi often smiled. Don't get me wrong - she had anger and fear and frustration too, but her moods changed so quickly and smiley was definitely her default setting.

So when I came across these pictures on my mac, actually while I was looking for a decent photo of our missing cat, I smiled too. I have found it hard to look at photos - I can do it sometimes but often I shy away. But I saw these and I even felt confident enough to scrap them.

So, here we go - first the photos ...

It saddens me now that I can't remember why I took them - I think it was just one of the 'just because' times. But I love these photos because they capture just how facially expressive she was.

And because I smiled when I saw them, I scrapped them. I followed the sketch for the monthly challenge over at UKScrappers simply because the sketch had 5 pictures. It didn't win the challenge but I don't care - to me it's lovely. Not because of the way I did the page, but because it brought me a smile as well as the usual tears.

The writing on it - "smile when you think of me" came from the lyrics of a song we played at her funeral. The song is by Megedeath and yes, Isi was a fan. Her version of "Symphony of Destruction" had to be seen to be believed!

So Isi, you always surprised me and you still do.

What do you see?

Well, what do you see when you look at this picture? A beautiful little girl, carefree, smiling, fresh from a bath and ready for bed, holding her favourite soft toy. Look a little closer and the background isn't a normal room, maybe a hospital room instead? Does that change your perception?

This is the photo that went on Steve's facebook page when he had to announce Isi's death. This is the photo that I put on UKScrappers to do the same. This is the photo that was printed in the order of service for her funeral. This is one of the last photos I took of Isi before her operation on 6 September 2011 from which she never woke up. This is the photo that made Steve cry when I came back from the hospital after her death and uploaded it because he wasn't there that night but looking after our other two daughters and he hadn't seen it.

This is the last record I have of Isi being her normal self, and for a while I hated this photo. Well, not hated exactly, but I couldn't look at it again afterwards. It reminded me too much of her death - it was her 'poster child' picture for her passing. So I'm going to start here.

I remember this night so well, but that memory may fade so I will put it down now. We got to the hospital in the afternoon, unpacked a bit, faffed for a bit more. The doctor wanted yet another blood test that we had done on Friday. I asked why as we had the results from Friday's test but the doctor said it had to be done the night before. I asked him why it had to be done on Friday as well but I didn't get a satisfactory answer and that pissed me off. You see, Isi hated blood tests - she had so many during her life and so often they had problems finding a vein because she was pale and small that she was scared of them. I hated the thought that we had put her through unnecessary pain, But, we got over that, played with all the toys we had brought to the hospital (apart from her chess set as that was daddy's game!), poked around a meal that she didn't like, ate a yoghurt instead and then had a long bath which she enjoyed. It was in the special bathroom at the hospital and it was more comfortable for her than our setup at home. After this special bath, we were confined pretty much to our room and I told her I wanted to take her picture again. Now, she loved having her picture taken (ironic really as because of her blindness photos meant nothing to her) so she smiled and even though she wasn't facing the camera and it is not a perfectly composed shot, I like to think it shows how easily she could find something good in a bad situation. She was scared of her operation and in hospital again, which she hated. But the simple pleasures of a nice bath, some time with mum just playing, a strawberry yogurt and having her picture taken brought her huge smile back to her face. The smile that everyone commented on, the smile which could (and I know this is such a cliche) light up a room. I miss that smile, I miss her but I think the thing that I will take from this photo is to embrace the little pleasures in life. Those small moments that make you smile are worth more than gold as they keep you going and they make the unbearable bearable.

Thank you Isi.

The worst day of my life

Now, you would think that it would be the day Isi died. I mean, that's the obvious answer, right? I'm not so sure. When Isi died there was so much support around us, holding us up, keeping us going. Steve comes from a large family and also has a wide circle of friends, all of who rallied round in their own ways, making their way over to us in France for the funeral, listening to us for hours if we needed to talk, sharing companionable silences when there were no words, helping with practical arrangements. And then there were the cards and letters from those who couldn't make it over and all the online condolence messages. The children from her school who sent pictures and the parents who I had never met with their letters about my daughter. And then, there was so much activity - funeral arrangements to be made, people to see, our other two daughters to be looked after, places to go and decisions to be made. It felt like we were near the edge of a cliff, but there were so many people in front of us that we couldn't really see it or focus on how far down it dropped.

Now, there are days like today. Just ordinary days, no special occasions or date to commemorate. The crowds of people have all gone. There's nothing in particular to do. Today it has really hit me that she is not here. Not only is she not here, she will never be here, ever, ever again. I can see the edge of the cliff now that there are no other people in the way and the Grand Canyon has nothing on this baby! And I think this is worse because there is no end in sight. Isi was ill for most of her all too short life but there were always goals in her treatment, progress that could be made, things that could be done. Now, there's just this bottomless pit. How does this nothingness, this emptiness get batter? I don't know. I'm not sure it ever will, I just know I have to keep going.

The worst thing that has happened in my life is Isi's death. The worst day of my life, well the jury's still out ion that.

So here's my plan - every time I post I will take one of the photos we have of Isi and write something about it. If I have no photo but a memory then I will write that. She is the void in my life and I will attempt to fill it a little with memories and thoughts of her. It won't be the same, but maybe it will help a little.

If anyone reads this then thank you, if not then it doesn't matter. The sprint is over - the marathon begins!

Take care.

Rebecca

Introduction

First of all, please let me say that if you don't want to read unhappy posts then look away now.

This blog is about remembering my daughter, Isi, who died on 12 September 2011. By the very nature of its subject it will not be a happy blog.

I need to do this to help me remember, but also so that others who knew and cared about Isi do not forget. This should probably be a private thing but the way I feel right now I want the whole world to know about my special little girl.