“You will never know how much you believe something until it is a matter of life and death”
C. S. Lewis
I am terrified when I think about the future and try not to look too far ahead. I catch myself saying ‘please God’ after sentences which is something my Granny used to say and I always found odd. “I’ll see you next year, please God”, she’d say, knowing that there was every possibility she might not live until the following summer. It seemed to me such an odd thing to say, I had no concept of death or dying; but now, I can barely look six weeks into the future without adding ‘please God’ at the end of every sentence.
When I began to realise the extent of H’s physical difficulties I worried about how I’d care for a grown man, unable to do anything for himself. How would I lift him, wash him, change him? It came as a cold hard blow to the chest when I discovered that I would be incredibly lucky to be able to care for him as a man. There is every chance he won’t make it that far. I mention again the Consultant who spoke to me last week and said, “We neverexpected him to make it this far”. It is a strange and surreal way to live. You can’t think about it too much. You can’t believe it’s true. I can say words like life-limited and life threatened but deep in my heart I have to believe that it isn’t really going to happen; that the doctors have got it all wrong. I don’t think I’d make it through the day without convincing myself of that.
I worry about the effect having a brother like Little H has on Cheeky as much as I worry about Little H’s future. How will he cope? How can a child possibly cope with something like that? I spoke to our palliative care nurse about explaining to Cheeky why H spends so much time in hospital. There are a lot of books out there aimed at siblings of children with Autism or Downs Syndrome but I could find nothing appropriate for an undiagnosed child. In any case, it wasn’t the ‘label’ (or lackof) that I wanted to explain, it was why H and I were regularly whisked off in the back of an ambulance and Cheeky was hastily bundled into the back of a friend’s car for an unscheduled playdate; why Mummy had to give Little H a ‘special kiss’ (mouth to mouth) and why we used oxygen. In the end, I made a book myself with photos. The book the nurse returned with wasn’t what I had expected and led me to question how much I should be preparing Cheeky for what may happen in the future. It was called ‘Sam and his Special Book’ and is about a child who is life limited and who thinks about what his bedroom might look like in heaven. I sobbed when I read it; then quickly hid it out of sight. I’ve been given books by the nurses about preparing an end of life plan and thinking about funerals, Mr. M and I have had to discuss Little H’s ‘resuscitation status’ with our paediatrician, we visit a hospice and I’ve seen forms with the words ‘life limited and life threatened’ written in black and white (there is something so much worse about seeing it written down). But I have been metaphorically putting my fingers in my ears, closing my eyes and chanting ‘lah lah lah, I can’t hear you!’ But it’s there. It’s a burden you carry round with you all the time. It’s a sick feeling in the pit of your stomach, a heaviness in your heart. It never leaves. Some days I can almost forget and behave like a ‘normal’ functioning adult. But other days it sneaks up and grabs me by the throat, leaving me gasping for breath. Those are the days when I wake and silently pray ‘please still be alive’ or the days when his seizures go on too long and I beg ‘not now, please not now, I’m not ready’. (Will I ever be ready? Is anyone ever ready for that?) But I have been warned; I am aware that this is a possibility. Cheeky hasn’t.
So what should I do? Burden him with that knowledge and prepare him that it’s a possibility or avoid telling him and deal with the catastrophic consequences
when if it happens? I don’t know.
He is only three. Too young to
understand the real implications, but the maybe slowly introducing him to these
things might be better than a formal discussion when he is older. He found the book anyway, so the decision to
share it with him was taken out of my hands.
I didn’t change the words. Maybe
I should have? He didn’t ask any really
difficult questions, except he seemed a bit confused that the doctors couldn’t
make Sam better. “But doctors can make you better Mum, can’t they?” He could see the similarities with H - Sam
has an NG tube, he swims with his brother “Me and H like swimming at Acorns (the hospice we use)”, he has a
special chair with wheels. We talked
about heaven and God and he knows (in as much as a three year old understands)
that his Nanna and Granddad are already in heaven. He seemed to enjoy it as a story but didn’t
pick up on the wider implications.
I’ll hide the book away again now, perhaps more for my own sake than for Cheeky’s. And maybe we’ll revisit it again at a later stage. I won’t lie to him and there may be a time when he will begin to wonder and ask those questions. There may also come a time when it will become apparent that we do need to have that discussion. We’ve been warned by our Consultant and our palliative care nurse that there will be a time that they will want to have that discussion with us. But in the meantime, I think I’ll keep my fingers in my ears and remind myself that the doctors don’t know everything.
The last page shows Sam standing (though he’d previously been in a wheelchair) opening a door to an unseen bright light. Cheeky wanted to know if he was going out to play in the snow. I smiled and said ‘maybe’.
You can see an interactive version of the full book here:http://www.paediatric-chaplaincy-network.org/media/online-videos/sam-and-his-special-book/