The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

My (not so) normal changing bag(s)



Remember that feeling when you have a newborn baby and you try to leave the house?  You check and double check the bag – nappies, wipes, nappy bags, change of clothes (x2), bottle of milk etc ...  It seems to take forever to get anywhere and the amount of packing and checking involved is no less than you used to do for a week away.

You thought that was hard?

These are our ESSENTIALS for leaving the house!

From left to right:

Bag 1: Black rucksack style bag - Feeding kit containing ...
Feeding pump
2x giving sets
PH strips
2x 60ml syringes
Bottle of cooled boiled water
500ml container containing H’s ketogenic feed

Bag 2: Long black bag with the patterned Disney store carrier attached – the life saving resuscitation kit, for use during seizures, containing ...
Portable oxygen cylinder (in the long black bag)
Bag and mask (in the Disney bag – the original bag it came in fell apart and I thought I’d use something a bit brighter to carrier it in)
Oxygen mask
Midazolam

Bag 3: The changing bag
nappies
wipes
nappy sacks
change of clothes
extra socks for H’s hands (so he doesn’t pull his NG tube out – but they often get wet as he sucks them so need replacing often)
spare NG tube (just in case he pulls his out)
Tape for fixing NG tube (duoderm, hypafix) & scissors to cut it
antibacterial hand gel – in case preparing feed somewhere they don’t have soap
clobazam –  medication for clusters of seizures, plus 10 ml syringe
Blood testing kit, with ketone strips and blood glucose strips
Seizure management plan – a 3 page detailed care plan which outlines what to do in the event of a seizure, written by his consultant paediatrician, in case we need to call an ambulance or end up at a different hospital.

That’s the bags I take with me everywhere I go – dropping Cheeky to nursery, popping to the shops, hospital appointments or going to a friend’s house.  I have a list by the front door that I check each time I leave the house!  I also have a bag in the boot of the car packed and ready for any emergency hospital admissions which contains clothes & toiletries for us both.  Having it packed in advance means there are no last minute panics when the ambulance arrives.

So there you go!  Little H doesn’t exactly travel light does he?


xxxxx

This post is written as part of the bloghop #definenormal.  Pop along to Just bring the chocolate to find out more, join in and get a funky badge too, just like the one on the right!  :D



Comments

  1. Wow, you don't travel light. You outbag me by a mile. As Dominic has got older, and his wheelchair has got more tippy I've slowly reduced the amount I carry down to the bare essentials. Will still constitutes 3 or 4 bags, but they are generally smallish ones.

    Perhaps being a bag lady (meant in the nicest possible way!) is your niche in the market? There aren't any nice feeding pump bags or oxygen bags out there. We should design some!

    Thanks so much for a glimpse into your normal life. Can you remember what it was like to just walk out the door?

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  2. It's a long time since I could just walk out the door! Most of it is second nature now thankfully. Funny you should mention about the oxygen bags - have been scouring the internet and found nothing. Wish I was a dab hand with a sewing machine.

    Bag lady! Ha ha, I like that! It's worse when I'm taking cheeky out - have a bag for him too. My own lovely handbags have been relegated to the bottom of my wardrobe & my purse and keys just get rammed in the side of the changing bag! xxx

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  3. Thanks so much for sharing this. Funny how it's not just "normal" that means different things to each of us, its words like "essentials" too!
    I'm with Renata. There should be nice bags for all this essential stuff.

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  4. Wow! Now that is some luggage! I thought I had it bad with the twins. Thanks for sharing!

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  5. You outbag us too! Quite something for such a little chap. Our luggage varies depending on what Chrissy decides she wants to 'hold.' Looks like you ladies have found a gap in the market :-)

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  6. Although I have 'stuff' I realise how fortunate we are that most of it fits into my oversized handbags - and that imaginary friends take up very little room - here's to finding some lovely bags for you...

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  7. i think that you need a donkey...

    but seriously, crikey, when i think about what i have "to carry" - ramps and wheelchairs in and out of the car (this will soon no longer be such a problem when our WAV arrives)- i travel lightly in comparison.

    thank you for sharing your normal with me

    x

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  8. Thanks for all your comments! I need arms of steel to cart all that lot around!

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  9. Even in the days when my dd has lots of medical problems, I never had this much to carry around. But like that there are some things I MUST have now - eg Smiley's outsize nappies, because you can't get them in the shops, her favourite drinks-with-bendy-straws because she won't drink anything else even if she is thirsty! So yes, I have a check list too. Over from Special Saturday xx

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  10. Thanks Blue Sky - yes, like Sally mentioned above even our 'essentials' are different from the norm! Thanks for popping by and commenting.

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  11. Wow... That's some remembering. There was I wondering how we cope sometimes pushing a walker, buggy and just one bag of our not so normal, normal stuff... I saw a oxygen bag on wheels made out of a trunki in the cerebra magazine, but Renata is right you could should make some!

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  12. I seen that bag too! H's is only a little cylinder so wouldn't need something quite so big. Although maybe one big suitcase to combine all the items would be good, ha ha. Wish I was a bit handy with a sewing machine, or in anyway imaginative or creative, could make us a right fancy little oxygen carrier then!

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