A New Altered World

Today was not a good day, today was pretty awful.

Today Richard had to go into work early.  This meant I was on my own with the boys, rushing around trying to get us all ready and out of the door at a decent time.  It meant I had to take a tired, listless, neutropenic Hugo on the school run which is something I would really have rather avoided.  But that’s not why it was awful.

On the way to school it started to rain, so the rain cover went on the buggy and hoods went up as we battled against the wind and the rain.  But that’s not why it was awful either.

It was awful because as we were walking through the school gates Henry looked up at me and said ‘at least the illness Hugo has is not cancer, because people can die when they have cancer’.  It stopped me completely in my tracks.  I was shocked and heartbroken.

It was awful because I had to stand to one side in the playground and explain to my 6 year old son that his little brother did indeed have cancer.  I could almost hear the thoughts whirling around his head as the reality of the situation hit.  It was written all over his face with a look I don’t think I will ever forget.  I had to reassure him that while it could happen, it was extremely unlikely that Hugo would die.  I wanted to promise him that it would be ok, that Hugo would be fine, that he wasn’t going to lose his little brother, his best friend.  I’m his mum, it’s my job to protect him, to make everything right with his little world again.  But I couldn’t.

Instead I was stealing a small part of his innocence.  He was now having thoughts and worries that no child should ever experience.  It was quite likely that this moment was changing his life, that from this moment forward things would never be quite the same for him and I was completely unprepared for it.  The hugs and reassurances seemed so inadequate.

How had we gotten it so wrong?  Why did we think that an explanation of leukaemia and poorly white blood cells was enough.  We’d read the leaflets, followed their guidance.  Talked to him and allowed him to ask questions and answered them in an honest, 6 year old friendly way.  But somewhere in our attempts not to scare him, to not overload him with information, to protect him from things he shouldn’t have to know, we had gone wrong.

We had never hidden the fact that Hugo had cancer from Henry, but we had never explicitly stated it either.  We didn’t think we needed to, that it would complicate things.  Part of me was surprised that he didn’t know, that he hadn’t picked up on it.  But why would he?  He is 6 and we’d told him his brother had leukaemia, why would he question that further?

We’d become complacent, taken for granted that Henry was fine.  That he understood and was dealing with it.  We had commented only recently how fortunate it was that Henry had never associated Hugo’s illness with death.

It was awful because I then had to leave him at school, with just a few words to his teacher about our conversation.  I had to walk away and leave him when he needed me, when all I wanted to do was gather him in my arms and try to make it right again.  To try and help him deal with his new altered world.  A world where children get sick, really sick.  A world where children can die.  A world where his brother could die.  We can barely get our heads around a world like this, how could we expect a 6 year old to?

I walked away and I cried.  Tears of sadness, of guilt and of anger that this horrible illness was finding yet another way to hurt us.

It was awful because I spent the whole day worrying about Henry.  I got to have a reassuring hug from a friend, but what was Henry going through, what was he thinking, how was he feeling?  Had I said enough, or too much?  Had I made it worse, should I have sidestepped his comment, saved the conversation for another time when I was more prepared?  Should I have ignored it completely and left him to the bliss of his old world?  Had I got it wrong all over again?

After school we had another chat in the comfort of our own home.  We spoke of cancer, of death, of things my 6 year old son should not have to have in his head.  I tried to reassure him that he wouldn’t get cancer, that other people in his life wouldn’t get cancer, without making promises I couldn’t keep.  I talked of people that loved him, that he could talk to if he needed to.  I think he is ok.  I think he is a little more worried and scared than he was yesterday.  That today he has grown up a little more than he should have done, but I think he is ok.  I hope he is ok.  I really hope he is ok.