Monday, 8 February 2016

He's not taking this lying down!

"Ha ha, fooled ya!"
Despite his happy demeanour, Hugh can at times be a bit – how should I say this – challenging/ grumpy/ stubborn?  Suffice to say, it’s not smiles and giggles all day long.  Unable to communicate verbally, Hugh has for some time now, been using his own tried and tested method of making his views known.  When he’s content, happy and generally getting his own way, he is full of smiles.  Yet if you try to get him to do something he dislikes, for example physio he’ll put on his best fake cry and feign sleep.  The fake cry can be quite convincing and at first sound can appear like he is genuinely distressed – the absence of tears though is a pretty good give away.  The fact that it stops as soon as he’s got his own way is also a sure sign he was having us on!  For example, if it’s too noisy when his brother has friends over, he’ll cry and rub his eyes like he’s tired; once taken to his room and put to bed, he’ll immediately start laughing and rolling around!  


He’s cleverly working this trick in lots of different scenarios and for the most part I am impressed with his ability to convey his feelings and get what he wants.  Recently, however, he’s taking to using it more and more often.  He can be quite wilful and stubborn (no idea where he gets that from!) to the point he can make himself sick in frustration.  I ‘get’ that he’s trying to say “NO!” and “I’m not happy about this” or “I don’t want to!” and that for him, this is his only way of saying that.  I get it, I do.  But sometimes, you just have to son.  If Hugh had his own way, he would happily spend his days in his pyjamas, in the house, rolling around the living room floor playing with balloons or lying in his bed watching his bubble tube.  (Can’t say I blame him to be honest!)


I was thinking the other day that it’s not dissimilar to that stage of development where babies/toddlers say ‘no’ and ‘I don’t want to’ to pretty much everything.  Hugh’s pushing back against anything remotely unfamiliar.  Yet, how do you reason with a profoundly disabled, non-verbal child?  How do I make him see that in some instances, regardless of how much he protests, he’s still going to have to what I want, be that getting dressed or lying down for an x-ray? Mind you, if I remember correctly from Sean’s demon-toddler days, it wasn’t so easy to reason with him either.  For now, we’re working through it, pushing him when we need to and reassuring him as best we can. 


Last week, he got star of the week for lying down to get changed for swimming at school.  A big step for the little monkey that will happily roll around the living room floor but point blank refuses to even lie down at school! So I’m pretty proud of him for that.  Small steps and all that  ...



Wednesday, 3 February 2016

Blogging for the Greater Good and All That

The reason I originally started this blog was purely, wholly and entirely selfish.  I didn’t set out to help anyone, I wasn’t planning to influence people or raise awareness, I had simply reached a point in my life where if I didn’t get ‘it’ out, I was likely to implode.

The very first post was typed out on a blackberry phone; painfully slowly at 4 0’clock in the morning.  As the world slept, I watched the sun rise over the car park through the small window of the isolation room in the High Dependency Unit and poured out my deepest, darkest thoughts; my fingers struggling to keep up with the thoughts bursting from my brain.  I barely proof read it; I emailed it to a friend and it was gone.  And then, finally, came a sense of relief.  The pent up feelings of the terrible days that had preceded this slipped away and the sleep that had evaded me all night crept in.

From then on, I was hooked.  The experiences I couldn’t tell my friends for fear of upsetting them, I could tell people I had never met.  The fears I daren’t share with my family for fear of worrying them, I could share with strangers.  The deepest, darkest worries that I daren’t encumber my already burdened husband with, I could type and release into the ether. It was both liberating and cathartic.

I was anonymous for a long time.  Blogging enabled me to say the things I couldn’t, or maybe wouldn’t, say in real life.  Slowly, shyly, I shared it with people I trusted.  For the most part though I was scared to let people know how I was really feeling, how scared I was, how Hugh’s needs really impacted on us day to day.  Instead I posted photos to facebook of us painting or going to the park, not letting on how difficult such simple tasks were or how sad and exhausted I was. But in my blog, it could all come out; the fear, the sadness, the guilt, the anger, the anxiety, all of it.  It was like therapy.  All the thoughts that whirled and swirled around my head could be spilled out without the fear of upsetting people or of people thinking less of me.

I didn’t think of helping anyone else; I could barely help myself, what use would I be to anyone?  And yet, despite my initial blogs being an outpouring of anonymous grief and anxiety and fear, I hit a chord with someone and as a result of reading a post of mine, one person joined SWAN UK.  It was a little surreal to see her type in her introduction on the SWAN UK facebook page that she’d read a post of mine that had echoed her own feelings. I realise reaching one person is hardly ‘going viral’ but it made me realise that if I felt that way, and she did too, maybe there were others as well. 
#SWANUKBloggers - a force to be reckoned with
My blog is no longer anonymous and I’ve been lucky enough to have the opportunity to use it to raise awareness of not only our own very personal journey but also of some specific causes that are close to my heart.  As such, last weekend I had the honour of being invited to the very first SWAN UK bloggers conference where 13 new and experienced bloggers gathered to discuss how we could all work together to raise awareness of undiagnosed conditions and the challenges faced by families searching for a diagnosis.  Recent research suggests that an overwhelming majority of parent’s whose child has an undiagnosed condition feel isolated and frustrated.  Furthermore, not having a diagnosis is a significant barrier to accessing appropriate care, support and information.  These findings would certainly reflect my own experiences and as such, I am keen to do all I can to help change this. 

The conference covered lots of technical aspects of blogging – widgets, plug ins, self-hosting and the like.  Whilst some of it was a bit beyond my own technical capabilities, I picked up lots of valuable tips and hopefully over the coming few weeks, you’ll spot a few changes as I spruce up the blog.  But perhaps most exciting was the discussions and plans for undiagnosed children’s day (Friday 29th April 2016).  Obviously I’ve been sworn to secrecy, but, as the saying goes … watch this space!

So from very small (and slightly self-pitying) beginnings, my little blog is growing to a slightly less small, less self-pitying space.  I’m not quite changing the world (yet) but with the back-up of some fabulous fellow bloggers, I’m hopeful that my teeny tiny corner of the internet can help parents feel less isolated and fearful and ensure being undiagnosed gets the recognition (and support) it deserves.

While you’re here, why not pop along and check out some of the other SWAN UK bloggers.

Wednesday, 6 January 2016

When You Wish Upon A Star

When you wish upon a star,
Makes no difference who you are,
Anything your heart desires,
Will come to you…….

Imagine living in a fairy tale. Where the houses are like pictures on a chocolate box, painted in shades of pastel and decorated with fairy lights that twinkle and glow in the night. Imagine a brightly coloured playground outside your door, with slides and accessible swings where your children can play together, even if one of them travels on wheels.  Imagine a place where you can ride horses before you feast on a breakfast of ice-cream and pancakes, a place where a cookie-cart stops right outside your door with an endless supply of doughnuts and coffee, a place where you can meet pirates and princesses, gingerbread men and fairies.

Imagine being in a place where disability and illness and test results and fears for the future couldn’t touch you; a place where magic happens and dreams really do come true. 

For one week in December, we were there. 

I applied to Caudwell Children’s Destination Dream’s programme over a year ago, never daring to believe that we’d be offered a place. Once successful I was too afraid it might never happen to get excited about it; Hugh’s complex medical needs are such that he can end up in hospital at a moment’s notice.  We didn’t even tell our eldest son Sean that we were going to Florida until we were nearly at Gatwick!  

Had I even tried to imagine what it might be like, I could never have dreamt of a holiday as magical as this.  The Give Kids The World Village in Orlando, is a village specifically for children with life threatening conditions and their families – their motto ‘Where Happiness Inspires Hope’ sums up the experience perfectly. From the smiling, friendly staff and volunteers for whom nothing was too much trouble, to the daily visits from children’s TV characters, from the outdoor pool and splash area, to the accessible train and fairground rides, from the lively kid’s parties with fancy dress and sweets to the visit from Santa, everything was designed to create fun filled and happy memories. And there were endless, endless photo opportunities.  

It’s hard to find the words to describe and do justice to the whole experience, so instead here’s some photos of the special things we enjoyed.

Seeing Hugh's face light up as the African drum beats began and he recognised the haunting music of the Lion King brought tears to my eyes.  Watching the two boys laugh with glee as they enjoyed their first fairground rides together was priceless.  Seeing the awe in Sean's eyes as he met Chewbacca and listening to the giggles from Hugh every time Darth Vader spoke to him still makes me smile.  We must have walked miles and miles every day making our way around the five theme parks trying to squeeze in as much from every day as we possibly could.  We met Indiana Jones' stunt double and went on a mini-safari.  We took a boat through Jurassic Park, boarded The Hogwarts Express from Platform 9 3/4 and took a magical carpet ride.  We fed sharks, stroked dolphins and watched hippos swimming underwater. One of the many highlights for me was meeting the Marvel characters.  Captain America in particular spent a lot of time with Hugh and made him feel very special.  In fact at all of the parks we were whole-heartedly welcomed and treated like royalty.  

Alongside all the joy and happiness was a wonderful sense of camaraderie amongst the 25 families.  Each fighting battles at home, some obvious, some less so, but all determined to make magical memories as a family.  The children bonded immediately, in that way that children find so easy, and within minutes of meeting there was a gang of boys and girls chasing and playing and laughing, (almost) without a care in a world.  

The amazing trip would not have been possible without the immeasurable amount of planning and organisation from the Caudwell staff. They went above and beyond to ensure all our needs were met and we were properly supported.  The team of volunteers were a godsend, from helping us get checked in at the airport, directing us around the parks, taking photos, helping push wheelchairs and even accompanying us on rides - an extra pair of hands when we needed it.  And the medics?  Well thankfully we never needed them, but this trip would not have been possible for us without them. Having such highly trained staff on call 24/7 was the safety net and reassurance we needed to enable us to travel with Hugh.  

The week was packed with so much fun and laughter, but there were tears as well - tears of happiness, tears of joy but sometimes tears of sadness too.  

The Star Fairy lives in the Castle of Miracles in The Give Kids the World Village.  Each 'Wish Child' is given a star on which to write their name; the Star Fairy collects it and sends it to the Castle Sky.  It is a humbling sight to see Hugh's star nestled amongst the hundreds of thousands of stars dedicated to the Wish Children who have gone before him; waiting to be joined by the many more Wish Children that will follow after.  It will have a home there forever.  Poignant too, were the magical pillows the boys made together. The pillows are filled with 'a brother's love' and they have each slept with their pillows every night since.

Standing under the glittering lights of the huge Christmas tree at The Give Kids the World Village, listening to the choir sing "Silent Night", a lump grew in my throat; as magical as the holiday was, there wasn't one family there that wouldn't give it all up to have their children healthy, to have a future guaranteed.  And as  the week drew to a close, the safe little bubble where reality couldn't touch us began to draw in, and our thoughts and those of some of the families' around us turned once again to hospital letters, scans, appointments and treatment.  

Yet this holiday enabled us all to make memories that we would never ordinarily be able to make.  Memories we will treasure in our hearts and minds;memories that will help us through the difficult times ahead, memories we will hold on to forever. 

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do.