20 days:

It's been a week today since I last Rik or the girls, the longest I haven't seen my other half for in 12 years. I miss them all so much, we talk on the phone everyday but its not the same. I've attempted to write this new post 3 times but despite having ALOT of time on my hands while con has been sleeping so much, I just haven't been able to write anything and really I'm still not even sure what I'm supposed to write on a blog, I've never read one before, I imagine that they are supposed to be short, insightful, to the point, keeping people interested, my posts are rambling,sad and I go off on a rant sometimes. The intended point of the blog was to keep people informed of Connors progress but if I'm honest It's also a way of not having to deal with anyone, in 29 years I've become used to bottling every emotion up, i dont like discussing my personal life, i dont like people knowing my business, I don't like attention and my confidence has always been non existent, I still now find it hard meeting new people, and there a lots of new people in my life, those who are helping raise money for Connor just because they are decent human beings, lending their support because they heard Connors story and wanted to help. In this way the blog is a godsend because i can write things, that I would never say out loud and that includes thanking everyone on here, I can tell them how much it means to me, to all of us but face to face, i am useless, im not a "hugger" i dont like to "share my feelimgs" like they do in cheesey hollywood films, i never know whether to shake peoples hand and even then does that make me look cold? In truth the only people I am really affectionate with are rik and our children, I can never give them enough kisses, can never give too many cuddles, being away from them is a daily struggle, I wake up everyday with a achey feeling because I hear the sounds of a hospital ward not the loud noises of 3 happy children wanting to watch tv, or asking for breakfast, there is a saying - that u don't know what u've got till its gone but I knew what I had, i loved my life i didnt need a reason to start appreciating my family more. Getting back to the point:- Nothing major has happened in the last few days, Connors meds have just wiped him out, so I'm lucky if I get more than 4 hours to play with him each day, I am however pretty great at nearly all his computer games now, Con high fives me every time we reach a new level - thats all he wants to do when he is finally awake, that and operation. I reason that when he is asleep he is healing, and cant be in too much pain. I am myself only getting maybe 4-5 hours sleep a night and even then it's broken as Connors machines bleep constantly - letting me know that one drug is done, having another one start straight after, Connor waking up needing a wee,or him feeling sick, but somehow I never feel exhausted, in fact I lay awake until the early hours most nights willing myself to sleep but am wide awake, head full of worries. It's probably because i literally do nothing all day, just read, tidy up our small room, and walk the the short distance to the kitchen and back twice a day, I've counted the steps - 17 there and 17 back. At home when things were normal, me an rik sometimes used to count the hours till bedtime, so tired after a full day of work, school runs, housework, my body is used to being more active. The whole ward is on a kind of "lockdown", there is a nasty flu bug doing the rounds and none of the children on an Oncology ward need that extra worry, so the playrooms are shut, and there are posters on doors asking parents not to stand and chat in corridors or parents rooms as they don't want to run the risk of spreading germs. It's like a prison, but not in a bad way, I actually feel safe here, more relaxed even than when I am home, I know help is only a button away and our room is opposite the nurses station so I sometimes just poke my head out of the door if I'm concerned about even the smallest thing. I've watched Connor sleep more now than when he was a baby, and even back then it was a lot- ive been remembering how lucky we are that he is here at all, there was no cry when he was born, he was a dark blue colour and he had to be resuscitated due to the umbilical cord being around his neck, he was taken to neo- natal for 10 hours after his birth, I couldn't hold him and was worried we would not have the same bond as Ella and I, but as soon as he was placed in my arms, one look at his face was all I needed to know how silly that worry was. Looking at him asleep now, I can see how truly beautiful he is, he looks healthier than he has done in months despite what is going on inside him, his cheeks are less sunken,his hair has grown back a little and his eyelashes are full again- he always had eyelashes that would make a grown woman jealous! But there a few hairs on his pillow so I know it won't be long till he is a baldy again, he doesn't mind he says. I am hoping to see rik tomorrow, and my girls on Monday, I have tickets to see Mamma Mia with Ella, her last day of school holidays and the only day I will have gotten to see her, Monday will be a hard day so will be glad of a distraction, it will be the 11 th of June- exactly six months since COnnor got diagnosed, I can't tell you how fast it has gone, I know how much I've missed, especially of how much Lola has grown, in January she was 3 months into her 1 st birthday, on Monday she will be 3 months shy of her 2nd, I tell myself that Connor is the one who needs me more but as a mother, you can't help but feel guilty, it shouldn't have to be like this.