As you all know this blog started as an SMS just updating Bede’s physical condition. As it has grown I occasionally feel compelled to venture outside the scope. This post does just that.

Bede’s first chemo, Bede laughs in the face of cancer.

A while a go a comment was left on the blog that wasn’t approved.

It spoke of all the torture Roy and I were putting Bede through and the author said she hoped we would do the right thing soon.

Those of you that know us know it would take a bit more than some thoughtless words from a stranger to upset Roy and I or even to disturb our perspective. The comment did get me thinking.

We are at a stage of Bede’s treatment that at any time if Roy and I say it’s time to call it quits the doctors will support that. We have the ‘choice’.

It’s a funny concept that choice. I used to be lucky and naive enough to think people in situations like this had choices. That there would be value judgements, choices, to be made along the way. Most of all I thought there would be a choice to say ok Bede has had enough. That at some point it would be a matter of just gently letting him drift off. What a fairy tale that belief was.

In a treatment sense we have no real choices. It seems to me most of the families on this ward have no real choice. Most are fighting for their children’s life. We have the added responsibility of fighting for the quality of his death.

If 2 weeks ago we had chosen not to proceed with the treatment the tumour would have kept growing at the rate it was.

Bede was in excruciating pain. He would have had a horrifying death.

Because we went ahead it seems we may have thwarted some of the tumors growth and Bede’s pain is subsiding but he has needed blood transfusions, and has had infections and is just generally feeling pretty lousy after chemo but the treatment may buy him some good quality time at home playing with his brother and possibly a much less painful death. Prolonging his life prolongs his illness. There is no perfectly happy choice there.

We fight for him to have a better day but sometimes even those are rough, it is still the lesser of two troubles.

People may hold up this translucent illusion of choice in the hope of alleviating some sense of powerlessness but it is ineffective and unreal, that is not reality. Roy and I have no choices but a deep responsibility to honour Bede and all of his experiences whether that be life or death or the day to day struggles.

Tonight I met a beautiful young and wise Iranian woman. She said in a beautifully soft voice that there’s a saying that roughly translates to “God gives the hardest soldiers the hardest things” and she embraced me and kissed me. People tell you a lot of sayings when your child is diagnosed with cancer but that one really resonated with me. Perhaps it was the coarseness of the words mixed with the tender way she delivered them. We are strong enough to guide him through  and soft enough to embrace every moment with him.

We may not have real treatment choices, we may be powerless in the direction our lives take but we are dealing with a profound little boy. Filled with light and substance. That alone empowers us to make life choices. We choose to face each obstacle with love and joy and thankfulness. We choose to sing to him and smile and cherish him. We choose to make his life loving even when it can not be lovely. We choose the fullness of life for as long as we are gifted with it.

We would both be sorry to think that any of you out there thought we were putting Bede through the trauma of childhood cancer just to satiate our own selfish needs to have him here. There are no real choices except the choice to love him and shower him with as much joy as we can muster. I assure you we do this.

This is Bede’s life and it is actually not torturous. He knows no different, he grieves no loss and is present in every moment. He leaves the horrible moments behind in the blink of an eye and happily loses himself in his Mum’s smile. There is a lot to be learnt there. Perhaps it is Bede who has the real choices. The choice of how he lives his life and there is a lot that can be learnt from the decisions he makes.