Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Preparing for the future


“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/

Comments

  1. Oh god. A very hard post to read em. Very hard. Having a bit cry to be honest. I've been mentally preparing myself for "things" but hadnt thought about preparing thea.
    Much love xxx

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  2. You have summarised beautifully that hot dry lump in the throat that I feel when I talk, quite casually, to friends about Dominic as a teenager, while trying to ignore the voice chanting "please let me see you as a moody, spotty mini adult, don't make me forever wonder what you would have been like".

    The problem with no diagnosis is that we just don't know. It makes the limbo harder.

    I have always been as honest as possible with my oldest two. I've had to really. We almost lost Dominic when he was one and a half and they were brought into PICU to say their goodbyes. I had to explain it, to a 3 year old and a 5 year old. We still talk about it on occassion now, and they know that it makes mummy cry, but I answer their questions as honestly as possible. No flowery language that confuses them. They get more upset as they get older and realise the reality of it, but I remember being shocked by how accepting of it they were when they were younger.

    Thanks so much for sharing such a beautiful and painful post x

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  3. We don't have any other children, only Samuel, so we don't share this burden. We just have our own future grief to contend with and that is more than enough But the fact that we have to entertain these thoughts, is well just unthinkable. Perhaps I need to see the book you mention for my own sake.
    The thing we may have to contend with if/when we lose our boy is the empty nest that he will leave behind. x

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  4. But we will be the ones who prove them wrong wont we??
    Even though I have mentally organised funerals. It won't really happen. Will it?
    We have discussed death at length now with Joshua and Christona. They are 15 & 13, now so we have gone through the doesn't really understand and the hysterical won't accept it. Now they are calmly aware but in denial, much like me. Hugs

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  5. I cried too, though as a family all we were ever told was that Smiley's life expectancy was unknown, since she is not fully diagnosed. All I can say is that my daughter is still here against all the odds and I hope that you'll be blogging about Big H in ten years time xxxx

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  6. Thank you all for taking the time to read and comment. It has been bubbling away inside of me and by writing it down and getting it out I intend to bury my head in the sand a little while longer.

    I appreciate all your honest and heartfelt responses. I realise I am not alone in feeling like this.

    There is a link to the online version of the book underneath the picture Zoe. Be prepared to cry mind. Those of us with other children are bound to worry about the impact it has on them, but the thought of an empty nest is absolutely terrifying Zoe. Little help though they are, I send you lots of hugs.

    Rachel, I actually though of Thea when I read the book to Sean. She is that little bit older and would ask questions that I'm not sure I could answer yet. Sean has spoken a lot about the book lately, though we've only read it twice. He has mentioned heaven on a number of occasions - I wonder what it is that he took from the book and is trying to understand?

    Renata - I remember your post about explaining that to Lilia in the little cubicle. It broke my heart to read it and also wnet through my head as I wrote this post.

    Blue Sky - as always, your comments about Smiley fill me with hope.

    Tina - exactly - we WILL prove them wrong! And the fact that H is undiagnosed always fills me with that hope that since they don't know what's causing his difficulties, they can't possibly know what the outcome will be.

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  7. Despite what you may think you are very strong and very brave. It was hard reading your post because I think you have touched upon something no-one wants to think about, but nevertheless these things have to be discussed at some point. The book is a really good idea and your honesty and openness with your older son is admirable. xx

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  8. Ah, children really are amazing, aren't they? I really think you're doing the best you can for Cheeky - no-one really knows what is right or wrong, much as you'd love that answer I know. But I think gradually exposing him to the facts is better than a cold sharp shock later. think it's worth pointing out that doctors really can help most people so he's not scared for himself (sure you've thought of that). This was so sad to read and yet I hope you are finding it a help to get it written down in some way. You're right though, no diagnosis means no-one can possibly know when or if. Sending big virtual hugs x

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  9. Thanks Nanny Anne - I'm not feeling particularly strong or brave, but I know that I WILL be because I will need to be. Until then though I'll bury my head in the sand for a wee bit longer.

    Thanks Steph, it did help me order some of the thoughts and worries in my head. Writing them down is somehow easier than saying them out loud (though reading them back again is twice as hard). Yes, I did think about the doctors comment because Cheeky then had a bit of a cough and I was taking him to the doctors! Thanks for commenting and for the hugs too. xx

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  10. Your post broke my heart. My sister lost her child and it was devastating. To lose your very own child is the worst thing imaginable. I so hope that you will still be writing about your sweet boy in ten years time. Massive cyber hugs from across the seas. x

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  11. How terrible for your sister Di. For the whole family too, I am sure. Please God, I will be writing about him as a stroppy teenager and a big heavy lump of a man. Thanks for the cyber hugs - always appreciated. xxx

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  12. Sorry if I'm stumbling on old posts, but the more I read the more I want to read, because you are so unbelievably truthful and brave. And well, cheeky at the end, what an amazing sibling... Out of the mouths of babes, eh? Xxx

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  13. Thank you Areyoukiddingney - I appreciate you stumbling across and commenting on older posts. Thanks for your kind words, I try to be honest - it helps me make sense of my own thoughts too. Not sure about the brave though! :D I know, Cheeky's comment made me smile (and cry) too.

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  14. I've been in tears reading this, 'please God' is what I say too. Every morning when I wake I think 'please God, not today, don't let today be the day'.

    We were told my daughter stood no chance of survival when she suffered heart failure at 6 days old.

    She is the only surviving child that hasn't been operated on with her condition today.

    She is 14 now, God/life/nature has been kind to us. We are told by doctors this is borrowed time, just no one knows how much time she has borrowed.

    I pray that God/ life/nature will be as kind to your son, I do with all my heart.

    Take care xxx

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  15. thanks for sharing. V powerful post that sums up how a lot of us feel

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  16. Thanks Netbuddy - sadly, this fear does seem to resonate with a lot of people. I appreciate you taking the time to read and comment. xxx

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