my six year old's confusing world

So my Blue Eyed Boy, as I really do think of him, has always been the 'easy' one. I ask him to do something, he does it; not for a reward, but just to make me happy. He cuddles up in bed with me for stories and first thing in the morning; he looks forward to 'Mummy Days' (which we had a lot when I was well in the year before he started school when I was mostly spending each day with him) and chats away happily about his toys, friends and dreams.

But lately all this has changed. He has become fractious, irritable, rude. 'I hate you', he shouts to his godmother, whom I happen to know is one of his very favourite people in the world. 'I wish I had a different sister/mother', he will tell us, when we ask him to do something he doesn't want to do. He does not like his year 2 teacher (who admittedly is very strict and not exactly my favourite person either, but what can you do?) and is often reluctant to go to school in the morning.

This must be connected with my illness, but my illness has gone on far longer than this behaviour. Last year, even when I was at my most severely ill, underweight, skeletal, in hospital or wandering around like a ghost barely able to take care of my kids, he rallied like a little soldier and went to school 'happy' each day, and did I think enjoy his school days and his times with me that were moments of joy amidst the hideousness. I thought he was dealing with it all fine; but not so.

Yesterday I decided to get to the bottom of it and took him out for pizza and did a mixture of fun, games and serious chat. In the end, we worked out together that the three things most bugging him were missing Daddy (6 out of 10, but worse just after saying goodbye), Mummy not being better yet (10 out of 10) and Ms Severity his teacher (another 10 out of 10). Having got to the root of it - the problem is not his sister (2 out of 10 for arguments with her), or his friendships (0 out of 10 - he loves his friends and is popular), or the wider family troubles (4 out of 10, but he can deal with it) - I can now start to deal with it.

I've made an appointment to see his teacher. Ms Severity is scary, even to me, so I'm going to have to phrase my concerns carefully, in terms of his wellbeing rather than her teaching methods!

He is seeing Daddy this weekend and again in half term; all I can do is help to keep up regular contact and phone conversations.

And as for me. It made me question: have I been too open with my kids? It would have been impossible  to 'pretend' that I was 'better' at any point in the past year; our house is small, we have one toilet, and sometimes I'm on it, a lot. But practicalities aside, I have also always believed in being straight with my children. That if you don't talk to children about death, illness and uncomfortable things, they find out later anyway and are ill-equipped to deal with them then. And turn around to ask you why you deceived them - a much worse version of lying about Santa and the Tooth Fairy. But have I been too open?

I looked into his deep blue eyes and said firmly 'Mummy is fighting this thing, and fighting hard'. He looked away. I got him to look back at me and I said it again. 'I'm feeling much better than I was and I'm not going to have this illness all my life and meanwhile we all have to be brave and fight together'. He nodded, listening to me. 'It's not that,' he said. 'I mean, I know that.' 'Then what?' I asked. 'It's so unfair,' he started crying. 'Why did it have to happen? Why did this happen to us? It's been going on for so long'. And I realised that what was affecting him was not my attitude to my illness or the fact that I have been open with the children about my different treatment options and the days when I feel better or the days when I need more rest, but rather just the cruelty of life - that these things have to happen at all.

We cannot protect our children from this, however hard we try.

In Pizza Hut, at the next table, was a woman paralysed from the waist down, in a highly complicated and fascinating (to a six year old) wheelchair. She and I smiled at each other. She was with her parents and a little boy about 7 or 8. Dylan and I looked, and looked away, and played our colouring game; we ate our pizza. Later, he said 'that Mummy could've been you'. And I said 'exactly'.

He was a happier boy at bedtime than he was after school; the only way me and my little family (me, my children and my soon-to-be kitten) will get through this is if we all stick together and are honest.

But perhaps I will try to say less when I'm having a bad day, and just go to bed earlier. Already my daughter and I have shielded Dylan from the worst of my IC pain; but I think it is clear that I need to do more. It's a fine line that we have to tread as parents; we can only do our best. Which is what I have been doing, and even if I wake at 5am worrying whether my best is good enough, tough. My best is all that I have to offer.