Wednesday, 29 January 2014

"Wiggling" the Wires

I wasn't totally sure what to call this post, mainly since I'm pretty sure the phrase "Wiggling the Wires" is another "Thompson Special", and not necessarily in the Brewer's Dictionary of Phrase and Fable... but actually, the post title font made it look so right that I went ahead anyway.

We use this expression frequently, mainly when we achieve that all-too-rare sense of calm, the astounding realisation that actually we seem to be on an even keel  (with any or all of the children) and "wiggling the wires" is the one thing you don't want to do. It's geek speak, but let's face it, coming from our family that's really not surprising. The circuit works, so don't. touch. anything.


But sometimes, the very formulation of that thought, the recognition that there is such a thing as a status quo can be enough to rock the boat. You sit in a review appointment and utter those fateful words:-
"It does seem that things are quite stable at the moment..."
and it all falls apart. Spectacularly.
Having just done exactly that at Gt Ormond St. Hospital on Monday when discussing A's funky gut and all its issues I am sitting here waiting for the bomb to go off. Or the predictable meteor strike. I'm trying really, really hard not to be a pessimist, and hang on to the hugely exciting news we were then given, but inside I feel not a little jumpy.

Surprisingly, since his weight's not great, eating not brilliant, nutrition not good, we are about to lose A's feeding tube.  We haven't used it for nearly six months (apart from giving liquid medication) and he's grown upwards. Definitely a great sign.

Bizarrely though he's not impressed. It's been part of him for almost six years, since he was two. It's a security blanket I think, once for us when we felt so powerless to help him as we watched him fade and fail to thrive, but now for him. He knows he can ignore my cajoling and pleading to eat his meals (unless it is rice, ketchup and free-from sausages but I absolutely refuse to serve this twice a day, every day!) because he knows there is back up. But it's a psychological thing though, because we haven't used it as back up in a long time. So we about to really "wiggle the wires" when things are pretty stable, and go for it!

Despite it clearly not being a living part of his own body, this tube is (as far as he's concerned) a very real part of him. Part of his identity. In an attempt to understand his point of view (and odd lack of excitement) I asked him what concerned him most.  And he's worried how others will think of him without it.

So I tried to consider parallels in my own life to try and relate to this surprising response-
  • Wearing my glasses for the first time - looking different and wondering what people might think. That was up there with leaving home in your slippers in terms of feeling on view. 

  • Dyeing my hair - in fact this sums it up well because I'm *always* too nervous to do anything dramatic/irreversible to myself. 

  • Buying a new car - particularly if it's really different from before. 
It's all those things which make you YOU and if changed might influence how others think about you. Deep stuff for a not-quite-eight-year-old. A (mostly) serious nearly eight year old, with a wicked sense of humour. It's at times like this we totally exploit that, turning the stressful into the humorous. If he can laugh about it, it's often acceptable, if the joke is his own, you know you've won him over.

So I was pretty relieved when he announced this morning that he was looking forward to his new tummy button scar. Apparently not many superheroes have a second and it's a badge of honour. 
"I won't have a Harry Potter scar, but I will have a Tummy of Awesomeness. Two tummy buttons, the second to turn my super powers on and off!"
Not quite the joke I was hoping for I guess, but it's progress. Progress on so many levels for a little boy of whom we are so very, very proud. 


This week (9th-14th Feb) is once again Feeding Tube Awareness Week. Last year I posted this and appropriately, for this year's awareness week we say goodbye to his tube. 



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26 comments:

  1. What a huge event in his life and for you too. I love his view that he will have a tummy of awesomeness - that is a great attitude to have and I hope that when the feeding tube does finally go that it is a smith transition for you all and not too emotional x

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  2. Aww that is so sweet, what a brilliant, positive way to look at it all. It sounds like your son has a wonderful way of turning things into something good...I hope it all goes well.

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  3. It must be very difficult for him to understand when it has been part of him for so long but a great step and I hope he adjusts to it quickly.

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  4. A big change but he's got you to help him through it and it sounds like he's starting to feel positive about it now xx

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  5. I love the idea of his Tummy of Awesomeness. It sounds like a really exciting time for you all. Thanks for sharing this very moving post.

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  6. Wow this is a huge step but a great one! keep trying to be positive and be amazed at how adaptable kids are to change. xx

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  7. Such a brave little boy. Like that he has put such a nice spin on it - super power button x

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  8. What a positive step! I can certainly see it from your sons point of view though. Most of us fear change, even good change, because it's moving away from the familiar. I'm sure he will adapt quickly and enjoy the freedom it gives to be free from the feeding tube :-)

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  9. Can definitely understand that it would be hard for him, after having the tube for so long. Good luck with all of it, he definitely sounds like a boy to be proud of, with a great attitude to his new scar!

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  10. Brilliant, a brave little boy. No wonder you are so proud xx

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  11. Oh bless him what an amazing boy and what a way to think of it as well - his two superhero scars - what a real life one he is as well dealing with it all x

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  12. Don't they just say the most adorable things. I know what you mean about jinxing yourself. Nursery hadn't "observed" Aaron on staying dry in his documents. I said but he has been dry Sept Oct November and December - the day after I said it, he wet himself during circle time! The power of sod! :-( xxx (Sounds like you have your very own super hero) xx

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  13. He has great sense of humor! Way to go SuperHero!

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  14. What a brave little boy...it is amazing how resilient they can be!

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  15. What a fab attitude your son has...love the idea of an on/off button - just what every super hero needs (I bet Batman & Spidey will be really jealous!)

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  16. Love that Tummy of Awesomeness idea! Change is scary, even for us adults, but I hope it's a great step forward for you all x

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  17. Love that Tummy of Awesomeness idea! Change is scary, even for us adults, but I hope it's a great step forward for you all x

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  18. Aaah sounds as though it's hard for him, but that you're dealing with it very sensitively. A big step for a wee lad. But at least his new superhero button will help!

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  19. Oh what a lovely little boy. A true superhero indeed.

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  20. He is so brave so I am sure with your love and support he will overcome his fears and anxiety.

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  21. He is a brave little soldier, keep supporting him and his confidence will grow naturally.

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  22. What a brave little Man, great step for him, well done you too!

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  23. I love the idea of a superhero belly button! - Belly of Awesomeness - brilliant!

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  24. Oh I hope he is ok when its no longer there, its so odd to them the changes as they believe its a normal things, good luck to him xx

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  25. What a brave boy, I'm glad he is able to smile about it. I hope it all goes well when it actually comes down the removal of the tube x

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  26. I always find your posts really emotional and completely inspirational. Sometimes it's really hard to be positive but you always seem to manage it. X

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Many thanks for taking the time to comment.

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