Monday, 28 October 2013

When Words Aren't Enough

Hugh’s fundraiser was on Saturday night.  I’m still not sure how much was raised; it was a lot though – an awful lot.  I am completely astounded by people’s kindness and generosity.  In a time of austerity and recession, so many people pulled together to make a difference for Hugh.  It felt like being on an episode of DIY SOS.  All these people, some friends, some strangers, some people I’ve not seen for years – all there to support my amazing little man.  I want to thank everyone who played their part.  But how?  Sometimes words just aren’t enough.


Thank you.

It’s not big enough somehow.

Not even when I type it like this: 

Thank you.

It’s just not enough. 

It doesn’t convey the depth of emotion I feel,
Or the overwhelming gratitude,
Or how humbled I am.

It doesn’t express how moved I am,
How my heart could burst,
How truly loved and blessed I feel.

And yet ... it’s all I can say. 

There isn’t a word or a sentence or a phrase that can express how I feel.

So ...

To all of my wonderful friends,
And to my family.

To everyone who donated the absolutely amazing auction and raffle prizes,
And to all who bid on them and bought raffle tickets.

To the band and the DJ
And the doormen and the barstaff.

To the random photographer
Who offered his services for free at the last minute after a chance meeting with my aunt.

To the people who couldn’t make it
But donated anyway.

To the people who travelled many many miles just to be there
And to those who came despite circumstances conspiring against them.

To everyone who sent messages
Of support, positivity and encouragement.

To the lady who left a surprise bouquet of flowers
Just for me.

To the people who went above and beyond anything I could ever have possibly imagined
To create a truly wonderful, magical, amazing night ...

Thank you.

Just thank you.

Sometimes you don't need words.

Wednesday, 23 October 2013

Tonight We Have Respite

Tonight we have respite. 

And while Hugh is cuddled and cared for by competent nurses, trained in every aspect of his care, Sean gets the undivided attention of his mum and dad . Together. Not one, or the other, while someone deals with Hugh, or feeds, or medications.. Both of us. Together. Just for him. 

On account of a brilliant First Ever parents evening, we took Sean out for a meal - to a local curry house; where they make a fuss of him and bring him sweets and where we'd never be able to get Hugh and his massive chair through the narrow door,up the teeny tiny corridor, round the tightest of corners to the jam-packed restaurant full of tables and chairs and customers. And we ate and we laughed and we ate some more. It was lovely.

And tonight, I can go to bed at whatever time I like (it will be early!) - not at midnight because Hugh has decided (again) that sleep is for losers. I can close my bedroom door without worrying I'll miss an alarm ora pause in breath. I can sleep, without the fear of seizures, or choking on secretions, or his latest trick- sleep apneoas. I won't wake until morning, not having to get up 5 or 10 or 15 times to re-set alarms, do chest physio or put Hugh in the recovery position to aid his breathing.

And Sean won't be woken in the middle of the night by the screech of alarms, or early in the morning by the sound of his brother's crying.

Tonight I didn't have to mix feeds and weigh powder and draw up medication into syringes. I didn't put on creams for eczema, tape sats monitors to tiny kicking toes or switch on the video monitor.

Tonight is a break or us all. 
It is respite. 
A break away from the routine.

Which is good. 
And important. 
And necessary.

And ten miles away, my baby is in a bed, in a room, in a hospice, on his own.

While his family ate and laughed together, a nurse bathed him and put on his pyjamas.

While we sleep, a stranger comforts him in the night.

Respite is good, and necessary and important.

But tonight, before bed, I could only kiss one of my babies goodnight. 
And that doesn't feel so good at all.

Thursday, 17 October 2013

Celebrating Progress

Children progress at different rates, even the baby development books will tell you that- never mind that they only leave your child with a two month window to achieve certain milestones! Sean measured up pretty average in most areas and a little speedy in others, I mentally ticked them off as he followed the expected pattern and eagerly awaited the next achievement on his list.  I even looked forward to the weekly Bounty and Baby Centre emails  which reminded me just how perfect and average and developmentally on target he was.  I unsubscribed from those emails when Hugh was about 10 months old, but I'd been deleting them, unread,for a long time by then. I'm not sure he has ever met a single developmental milestone on time, my guess is he's probably hitting a few of the 3-6 month ones now at three and a half years old.  But, you know what? Progress is progress, no matter how halting or slow and I'm happy to take what I can get.

So in celebration of my son's slow and meandering yet fantastic progress, I'd like to share with you some of his achievements of late. They're big big steps in Hugh's world, and in ours,and so I hope you'll appreciate them as such.

His vision and eye contact is improving

"Hmmm ... reckon this will fit in my mouth?"
Hugh's vision is poor, really poor. Technically he's registered blind but I always think that gives the impression he can see absolutely nothing, when in truth his eyes are fine- his brain just can't make sense of the things he sees and so he struggles to recognise things in the world around him. But lately he seems to be 'seeing' more and recognising things, most importantly - us! His hearing is fine and he's responded to our voices for a while, though he'd rarely turn to look, he would smile in recognition at the sound of us speaking. Lately though he is turning more often and smiling with flickers of recognition at our faces. I think he knows me by my glasses- they are dark framed which might be easier to spot- he has started swiping at my glasses with intent too and smiling when he's knocked them off.  I hope one day he will recognise me, it's starting to seem an achievable goal now.

He is gripping and holding things and using both hands together.

"I've got it Mum - and you're not taking it off me!"
A few weeks ago at conductive education, he held a maraca in each hand for the first time. Usually he can hold an item in one hand or the other but not both at the same time. He brought them both to his midline too (in the middle of his body- this can be difficult for children with neurological conditions as it requires both sides of the brain to work together). Since then I've spotted him grab at lots of things and hold them 
- a paintbrush at school that he dropped, he tried to find again with his hands on his tray and picked it up
- his mirrored chime-about toy he grips with both hands now and pulls it towards his mouth
-the blue ribbon on a balloon- he grabbed at it with both hands and tried to pull it to his mouth
 - he held a spoon and tried to use his other hand to push it into his mouth.

He is eating again. Properly. With a spoon and everything!

"Nom nom nom"
Hugh loves food, the sweeter the better, but ended up with an NG (nasogastric tube -up his nose into his stomach) after a terrible bout of seizures and a lot of powerful anti-epileptics pumped into his little veins. It was supposed to be 'temporary'; two years later he's still primarily fed through a tube. I'm currently replacing one tube feed a day with a carefully calculated meal containing no more than 2g of carbohydrate to fit in with his epilepsy controlling, ketogenic diet. This week we made soup. Potatoes are too high in carbohydrate so we had leek (low carb), celeriac (low-ish carb) and a  teeny tiny bit of carrot (higher carb), cooked in butter and blended with double cream. He seems to quite like it and at least it's a variation on my cauliflower cheese speciality. He's managing at least 5 mouthfuls but often more, much more, and then the rest I just put down his tube (when you've gone to the effort of weighing, blending and sieving, there is no way it's going to waste. Technically force feeding??? Erm ... Possibly...)

He is developing a cranky/ stubborn personality

"Who you calling cranky?"
True to the Murphy/Moran hybrid gene, he is displaying the stubborn bloody-mindededness of his brother and indeed his parents before him. Not to let a little thing like being unable to speak get in the way of communicating, he is pretty adept at shouting or whining to make his views clear. 

Here's Hugh's handy tips on getting his point across:
I do NOT want to stand up!
  • Not happy sat in the pushchair/bean bag/car seat? Shout and extend your body in an uncomfortable looking stretch until someone let's you out!
  • Don't want to be put in said pushchair/bean bag/ car seat? Go rigid! And shout. They'll never get your bum down that way!
  • Conductive Education? What... Where they try and make you roll and sit and stand? Sod that- too much like hard work. Fake complete immobility of all muscles and lie there like a rag doll getting mum to manoeuvre you into all sorts of crazy positions. Not working? Cry god dammit, cry! No-one will spot it's fake, surely? The lack of tears a give-away? Open your eyes- check ... Are they still looking? Cry some more! No good? Sleep! Sleep! Sleep! Open eyes to check they're convinced, make snoring sound.... Actually I might just sleep after all .... Zzzzz

(Yep, that is not a lie- my three and a half year old "profoundly disabled" son has mastered the art of fake crying and forcing himself to sleep as an avoidance strategy! Get in son! *proud mom moment* -albeit massively embarrassing)

"Yep, I am one pretty amazing Dude!"

So all in all, I'm mightily chuffed with our little man. 
Small steps and all that ...

And on that note I'll link this up to the 'small steps, big achievements' linky on Ethan's Escapades. They might be tiny steps but they're huge milestones for Hugh. 

Ethans Escapades