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.