Accepting My Child Will Never Walk

Why walk when I can float?
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!

"I told you - I HATE standing!"
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or sit or talk and he's perfectly happy that way. He's nearly 6 now, and for years I have beaten myself up, hoping that this therapy or that exercise would get him to do the things that just didn't come naturally to him. There's so many inspirational stories out there: the child whose potential was unlocked through horse riding, the boy whose parents spent hours (and millions) on this therapy and he now talks, the girl whose mum mortgaged the family house, brought her to America and she now runs marathons and gives motivational speeches whilst running a billion-dollar company.  Well maybe not, but you get the idea.

When Hugh was 1, I was told it was unlikely he'd ever sit or walk. It seemed ludicrous at that age that anyone could make such a judgement, particularly not knowing Hugh's specific condition. Yet that paediatrician had seen hundreds of children in her lifetime, enough to make a judgement call based on the evidence presented to her (I'd asked for he opinion and she gave it honestly- she wasn't trying to be a harbinger of doom). 

"Sitting by myself? Overrated!"
And people said 'just you wait', 'he'll show them' and 'take no notice' or 'that's ridiculous' and 'what does she know?'.


I was fed all the stories about this inspirational child and that inspirational family and this mother that spent every single waking hour of the day doing Physiotherapy and that child who'd defied the odds.

And I tried, I did.



I took him to donkey riding therapies and hydrotherapy. I spent hours each week singing songs associated with actions designed to teach him to roll or to stand. I played music and rubbed his feet with different textures. I sat in sensory rooms and hot and sweaty dark dens with flashing lights, trying to get his eyes to focus. I ignored his protests, his fake crying and his forced sleeping and I held him upright against wooden bars, moving his legs willing them to step independently. I held him over a huge blue rubber peanut shaped ball despite him having a raging temperature and a chest infection because we'd fundraised for this £600 assessment and it *might* just be the treatment that would help. Maybe we didn't go to America. And maybe I should have tried a hypobaric oxygen chamber. Who knows what could have happened? 

Or maybe, just maybe, that my child isn't the one who is going to defy the odds. 

Maybe he's going to be the one who doesn't walk, or talk, or sit, just like predicted.

And maybe that's not my fault. Or his.


"Rolling? Nailed it!"

Because surely, for every cancer-fighting marathon runner, there's a hundred more feeling like shit, barely able to make it to the toilet to vomit.

And for every child who defies the odds and doesn't just walk, but goes to university and becomes solicitor (honestly I was told that a child *just like Hugh* managed that) there's a hundred more that, well don't.

And it's not because they didn't try hard enough. Or their heart wasn't in it. Or their parents didn't love them enough.  Or their mum didn't believe in them. Or they didn't have that fighting spirit. It's just... Because. 

Because that's the way it is.

It's not about giving up or giving in or being limited by other people's or your own expectations. It might not be newsworthy or inspirational but sometimes just plodding along, doing what nature intended is fine too.

Here's to not defying the odds. To not achieving the unachievable.

Here's to acceptance.  

"I would MUCH rather just chill out in my beanbag anyway!"


Comments

  1. Beautiful post full of inspiration. Hugh is a very special boy who has a devoted family. That makes him a winner in my book xxx

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  2. He looks like a gorgeous and happy boy, you must be so proud of him

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    1. Thank you Lucy - I am very proud of him.

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  3. Beautiful post. You don't need to set his progress or his achievements by anyone else's. He looks so gull of joy and happiness in every single one of your photos. And happiness is the ultimate goal in this life. xx

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    1. That is so true Someone's Mum - happiness is indeed the ultimate goal and, bless him, Hugh is a very happy little boy thankfully.

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  4. Love this post and love that you've cut through the bullsh*t and said what so many are too scared to say for fear of being judged. Facing reality doesn't mean giving up or not trying hard enough for our kids. It just means acceptance, which is something that makes everyone happier. Lots of love to you and Hugh xxx

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    1. Thank you. You're right, acceptance does make everyone happier. Hugh, I'm sure, is happier that I'm not trying to contort him into shapes that his body can't handle and I feel like a weight has been lifted now that I'm not trying and repeatedly 'failing' to achieve something unachieveable.

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  5. Very wise and loving words Mama Murphy.

    I think our society has got much less accepting of just being, and just getting through, than it used to be.

    Celebrity culture seems to demand that everyone is exceptional. And yet really it is life itself that is intrinsically remarkable. We all need to stop long enough to notice that that's the case.

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    1. Thank you, and yes I think that's part of it too.

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  6. I am absolutely with you - my son has proved some of his doctors wrong, but the majority of them right, and all the 'inspirational' stories get a bit grating. It's nothing to do with not wanting it enough, or not trying hard enough, it's just not like that for everyone. I think what's more important for you and Hugh and the people that care about you both is that you notice the things that do matter - whether that's a particularly happy day out in the sunshine or a fun time splashing in water or a song that you dance around to like a loon and he giggles at.
    Lovely post, thank you for sharing.
    Lucas
    www.abstractLucas.co.uk

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    1. Thank you Lucas. Grating is definitely the word for it! Hugh has certainly taught me to appreciate the little things so much more - I love the suggestions you've made as these are genuinely the things that make us happy. Currently the song that makes him laugh most is The Circle of Life from the Lion King.

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  7. Thanks for writing this. It is exactly how I feel! My daughter is now 5 and although I still hope she will walk and we use the Upsee and do the physio, we sometimes have to look reality hard in the face and admit it may not happen. Sometimes that's the bravest thing I do....

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    1. I really hope your daughter will walk too - the Upsee looks fab!

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  8. Just being is highly overrated nowadays! You have a happy son, you're doing a grand job! The very best wishes to Hugh and all your family x

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    1. Thank you. He is a happy little soul thankfully xxx

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  9. We put some cultural value system that comes from I don't know where onto lives that are different. I suspect it's to do with fear. Fear that things might happen to us. I don't want to say different, because different implies wrong. Onto people and children whose physical and mental capabilities are obvious. Every life is equal. Who are we to judge and categorise what areas of a life should be changed? And you are right everything seems to be about doing. We are human be-ings. Let's just be. The ancient art of be-ing shows good grace and greatness.

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  10. Thank you as this is so encouraging. Beautifully written and Hugh is gorgeous! We absolutely need to be valued for who we are, not what we can/can't do or as parents the life story that we find ourselves in xx

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  11. Of course its not your fault or that of anyone else.

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  12. Find my brain saying "He's just six, there's plenty of time for things to change" - think I have watched too much rubbish TV or something, as I find it really hard to get the idea of "hey, that's how it is" too. Those inspiring tales are so tempting to believe in. Even though we all know that if it was always like that, they would just be everyday normality and not inspiring at all!

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  13. That's amazing. It takes a lot of guts to accept that in most cases we are not that "special," different one. Most of us are average :)

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  14. How refreshing to hear your perspective. I share it. My son has autism and is developmentally very delayed in all respects, and cannot talk. We do all we can with the energy, resources and finances that we have. And for the rest of the time, we enjoy and love him. We've adjusted our expectations and hopes and ideas and will find another happy medium. Much strength and kindness to you and Hugh.

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  15. Amen to that. That's the thing about "defying the odds" - hardly anybody does it. Wishing you both much happiness.

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  16. Thanks for sharing such an amazing post. It really touched me and we will share this in TotsGoodReads tomorrow.

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