1 year on.

On this date 11/01 last year our whole life got turned upside down, inside out and we haven't had a break since, it's been a year of tears, sadness, pain and heartbreak but somehow we are all still very much a happy family, don't ask me how exactly, but I know the main reason is our children who despite all the upset and separation still make us smile everyday in their own special ways.

We are coming to the end of  Connors treatment, he has one course left of the antibody trial then his tests for relapse will be repeated, we are scared - no petrified, that its all going to be ok, that all the awful things he has had to go through will be enough to "beat the baddie" but i know it will be a lifelong worry for us.
Connor doesn't have the fear, he says "when I'm better, and my wigglies are out u can throw me in the sea!" "When I am better, I am gonna play fight properly!" "When I am better I can go to school all day!"  

He hasn't responded to the trial that successfully, he has yet to complete a full course due to allergic reactions, and severe fevers, but I'm hoping the little he has had will do the trick?  He sure as hell is putting up a fight, he just gets on with everything thrown at him, he is amazing.

We managed to have 6 days at home over Christmas, it was rushed, and manic and we had days to sort everything , buying gifts online,  doing a food shop online but we were home and Christmas isn't the same I guess without a bit of stress! Christmas Eve Connor wanted to me to dye my very bleached blonde hair red, like Mary Jane from spiderman, so of course I did, And its only hair, if he had asked me a few years ago to do it I never Wud of, too afraid of what others wud say, but I cudnt care less now, I nearly cut all my hair off  a few times in hospital with scissors during stressful times, thinking of Lola not recognising me was the only thing stopping me sometimes.

 So Christmas morning we all woke up together which was bliss, we all wore new festive pjs and didn't take them off all day, we stuffed our faces, played games and watched movies like we do every year, the kids were of course spoilt rotten and we acquired another puppy to add to our mad house, a
shi- zhu for Ella named honey, we must be mad! and Connors beagle puppy (peaches) is just a tad
jealous of the tiny new ball of fluff

The days went so fast and before we knew it Con was due back at GOSH , it was gonna be sad not all being together to see in 2013, we hadnt even unpacked from his last stay, Connor is not a light traveller, he brings a suitcase of food( he will not eat hospital dinners!) a suitcase of pyjamas(he doesnt get dressed in hospital!) and a suitcase with his own tv, computer games and dvds(the hospital tv is way to small he says) so New Year's Eve, I stayed home with the girls whilst Connor and daddy were at the hospital, I spent my night cleaning Connors room and making space for for all the new toys, Rik and Con slept through it all.

Sad news:
Rik phoned very early the Next Day, upset and shaken , the very sick boy next door to us passed away in the early hours and his mums screaming woke Rik, my heart just sank,I got the girls dressed and we went to the hospital, the wards atmosphere was just awful, the nurses were upset, the parents
were quite, everyone just stayed in their rooms.

Later that day I went to get Con a drink and I met the boys mum in the hall, I just hugged her and told her I was so so sorry, she was just broken, she asked me to go talk with her and I followed her in her room, I was thinking, God she must be packing all his toys, his clothes, poor poor woman but the room was full of crying relatives and I just froze because when the door shut his family moved and the little boy who passed away was still on the bed.

If I said that I cudnt breathe, I cudnt talk , i cudnt move- it wudnt explain how I felt and I still see his face everyday,  he was dressed in a beautiful suit, but his eyes were open, his skin colour a vivid yellow/green due to liver failure, in all my life I will never forget it seeing him, all I could do was hug his mum and dad, say I was sorry and stare at his little body, a million thoughts in my head. His mum said "give me time Sarah and I will be there for u " I kissed her goodbye and walked into Connors room, straight into the bathroom turned on the taps and fell to the floor sobbing.

I was thinking this is it, I've cracked, I've lost it,  I don't know how long I was even in there, but somehow, I got up took the girls home, shakily drove home and ignored the thoughts in my head.

I cudnt sleep much the next week, I'm still always thinking about him, how unfair it is, wonder how his family are coping, I think about how he was the same age as Con, they had the same Cancer, the same treatment, were practically the same height and weight, they both love spiderman, I worry Connor will relapse like that, that he will look so ill, will be so unhappy, and I pray he will survive it.

I think about the bad stuff more when we have bad days here like the last two days, the latest course of antibodies has been abandoned as Connor reacted again and has constant temperatures, he is really miserable and I hate it, hate that I can't do anything, I hate its been a whole year of misery, I hate that I've missed so much of the girls, and I resent so much, the fact that life goes on despite everything, bills don't stop coming, friends stop ringing.

I just keep telling myself, it's nearly finished, Connor is nearly there, not much longer he will be ok, then I look at happy pictures of the kids of all of us, even days when Cons been unwell but is still smiling and I feel better because that boy never gives up and I won't either  xxxxx