Wednesday, 31 July 2013
Now I have to admit that within the world of blogging, where there are so many wonderful bloggers who can turn having a cup of tea into comedy genius, I do sit somewhat on the serious, sometimes borderline melancholic side (though I always try to end on an up –noticed that?). So I’m going to flip this one and start it on an up. Hey, we may even finish on one too. How I spoil you.
I’m feeling all a bit warm and fuzzy with this one. You see, my blog has been nominated for The Liebster Award by the rather fabulous Complicated Gorgeousness. This award is aimed to help promote small blogs and to bring a new audience to them. There isn’t an actual award as such – it’s more of a blogger to blogger game of appreciation ‘it’. Each time a blog is nominated, they must nominate five other bloggers and so on and so forth.
There are however, some rather entertaining rules to accepting this:
1) I must thank and link back to the blog that has nominated me. Complicated Gorgeousness – I owe you a Mars bar. Maybe even a Galaxy Caramel
2) I must answer eleven questions set by that blogger – you may get downgraded to a Dairy Milk if these are tricky.
3) I must reveal 11 random facts about myself
4) I must nominate 5-11 blogs
5) I must set them eleven questions
6) I must tell them that I have nominated them
So, here are my answers:
1) If someone gave you a free holiday, where would you go?
I have to say New Zealand for this one. My husband and I spent a year there about nine years ago. I loved the landscape, the laid back attitude and the Kiwi sense of humour. We had next to no money and travelled around doing whatever work we could find. I wouldn’t change that experience for the world, but I would love to go back and see what it’s like to stay somewhere other than hostels and travel in a car that’s less than twenty years old and has a hope of making it through an MOT. Never was there a sadder sight than us walking forlornly home from the garage, down the side of a motorway whilst clutching a pair of number plates. That was all that was left of our much loved 1983 Nissan Bluebird ‘Roger’.
2) What is better, Christmas or birthdays?
I am afraid I am one of those people who you want to punch for singing Christmas songs in October. I love it. I mean REALLY love it. I think it is mostly because I have the mind-set of a small child/magpie when it comes to shiny stuff. Nothing makes me happier than satisfyingly reflective foil wrapping paper or twinkly fairy lights. I love all the build-up really. Starbucks must rub their hands together in glee at people like me, who excitedly accept an absurd price hike for adding some flavouring to a coffee, putting it in a red cup and declaring it ‘festive’. I love the smell of cinnamon, spices and proper Christmas trees. I love the fact that you can spend an entire month doing things that you probably shouldn’t on the basis that, ‘it’s Chrissssssstmas!’ (said Noddy Holder style, of course.) I love that you can eat foods you would never normally touch and suddenly think it’s a good idea to try random festive drinks like Cherry brandy or Amarula cream. Only you don’t have any, so you end up trying some left over Christmas cake brandy with cherry coke or a bit of dangerously close to out of date Baileys (just me?). So, in summary, I like Christmas. Could’ve answered that in one word really.
3) If you could be anything in the world, what would you be?
I was going to get all out there and say a bird or a fish. But, the natural world is far too much like hard work and it seems foolish to abandon my position at the top of the food chain. So, instead I will stick in human form and go for a job ambition. I would love to be a quirky novelist. You know the type – living in a rambly house on top of a hill, working on an old typewriter, with a large array of colourful headscarves and a parrot named Hector. Only I can’t spell, I’m a bit scared of birds (since, The Birds) and I am rather partial to my pushchair/wheelchair dependant child. So I’ll settle for a decent laptop that doesn’t crash every few minutes (unlike this one, grr) and a rambly house on some nice flat ground. Oh, and the ability to produce fascinating prose and develop interesting plots would help. Or, failing that, the ability to write a controversial but hugely popular trashy novel series – I’m that fickle.
4) What is your favourite dinner?
I genuinely don’t know on this one. I am fairly erratic in my food choices. Whilst being an annoying vegetarian- but- eats-seafood type, I like trying new things. If anyone would like to cook me something to help me establish an answer to this question, you are very welcome.
5) Which celebrity manages to push all your buttons in the wrong way?
Now I’m not really sure they class as celebrities, but I am very freaked out by the Wonga.com puppets. I think it is because they are so rubbery. And the way they kind of hop. It’s all a bit horror film in the making. I can imagine waking up at 3am to find them sat at the end of my bed, menacingly chanting loan APR rates…
6) X Factor, or Strictly Come Dancing and why?
I kind of hate myself for it, but I am partial to a bit of X-Factor. I know it’s all commercialisation of music, Simon Cowell’s demon pop domination yada yada yada. But it’s also often pretty entertaining and I love a good rags to riches story. That’s my issue with Strictly, riches to riches doesn’t do it for me.
7) Who should have been your husband (but they didn’t know it)
I should probably earn some brownie points and answer by saying that no one could possible replace my husband. But that's not very exciting. Hmm…I’m going to have to go with a comedian. Which would probably be deeply disappointing, as they would inevitably turn out to be an off stage manic depressive. But I am going to give them the benefit of the doubt and say someone funny. I want to say Russell Howard, but he seems a little young for me (although I think we are actually around the same age, he just seems like he should be wearing long shorts and a school cap). So I am going to go with Tim Minchin. Although I bet he would steal my eyeliner (and I am partial to my eyeliner – unsupervised usage on a night out has led to an appearance akin to a panda leaving a boxing ring). Perhaps we could bond over the No7 counter whilst reaching for the last smoky powder pencil.
8) Describe a perfect day
Happy child, friends, good food, nice wine, decent weather, some form of evening and overnight baby-sitting service, lots of sleep.
9) If you could travel back in time to any decade, for any event, what would it be?
I would be fascinated to have a wander around London during the Elizabethan era. Just a brief wander though. The whole brutality/lack of sanitation/general fondness for beheading doesn’t make it an appealing long term destination.
10) Where do you stand on beefburgers?
I try to avoid that eventuality at all costs, though I did once slip over on a kebab in Nottingham.
11) What two words best describe you?
Eleven facts about me:
1) I have an irrational fear of belly buttons
2) I don’t like full fat milk or cream – it’s too close to the cow
3) I was once dared to go to an open audition for a play and ended up being cast
4) I have a Blue Peter badge
5) I can’t tie bows properly (and refuse to learn now – I get by just fine with the two loop approach thank you very much)
6) My geography is shocking. I mean really embarrassingly poor. To be honest, I don’t know where I am a fairly large percentage of the time.
7) If I am having a dull day, I like to talk to myself in French – it makes me feel all continental. But given that I only ever did GSCE French, it mostly involves asking myself the way to the swimming pool.
8) Despite always picking literature throughout my education, I…shock, horror….don’t like Jane Austin. In any format – written or televised. I know, I know - saying that as a Brit is like a form of literary treason. I promise I have tried. I really, really have. If she’d spiced it up a bit with a murder or a multi character sword fight, maybe I could get on board.
9) I have fainted consistently at every blood test I have ever had (how nurses LOVE me. Particularly when the waiting room is nice and full.)
10) I can’t cope with the brutality of nature and spend a large proportion of my time chasing cats away from the baby frogs in our garden and rescuing snails from precarious positions.
11) I once cheated when asked to give 11 facts about myself and only gave 10.
The blogs I would like to nominate are:
1) Abstract Lucas
2) Overcoming Movement Disorder
3) Sun, Moon and Stars
4) The Boy with Five Names
5) Life With Tyler
My questions to the blogs I have nominated:
1) If you could put anyone in charge of the country for one week, who would it be?
2) Of all the blog posts you have written, which is your favourite and why?
3) What is your earliest memory?
4) If you could ban a word or phrase from ever being used again, what would it be?
5) Where is your favourite place in the country you live?
6) If you were staying in a posh hotel, which newspaper would you ask for in the morning and which newspaper would you actually like? (much respect to you if they are one and the same.)
7) If you could have any job, what would it be?
8) What’s the worst piece of advice you have ever been given?
9) What’s the best mistake you’ve made?
10) Who inspires you?
11) What song do you secretly sing along to when it comes on the radio?
Over to you…
Thursday, 4 July 2013
You see, SWAN UK have been shortlisted for a National Lottery Award in the health category. Winning means exposure to a wider audience, it means the publicity that a small organisation simply can’t pay for. But in order to win, they need votes. Lots of them. Now if I already have you on board, feel free to just skip to the end and click through to vote. If not, have a read and see how you feel. Though you should know that I just bought a bumper pack of mini Cadburys bars and I’m in a sharing mood. I’m just saying...
I have often heard of people use the phrase ‘having the rug pulled out from under them’ – usually in response to a medical diagnosis, a family loss or a shocking unexpected social circumstance. When Little J became undiagnosed, that was a pretty accurate description. Only when it is happening to you, it feels more than that. When it happens so unbelievably quickly. When, within 24 hours, your seven month old has gone from ‘thought to be mostly healthy’ to ‘has a life long rare genetic condition, oh and it might be progressive’. When that happens, the metaphorical rug feels pretty damn big. In fact, it was more like the entire floor gave way.
And without that central support in place, the whole structure of our lives followed suit and began to crash down, wall by wall. Suddenly I couldn’t go back to work. In fact I feared my career may be completely over. Our income dropped by 40%. We had to move. Plans for a long awaited holiday were cancelled. We suddenly needed so much. We needed therapies for Little J. We needed equipment for Little J. Only we were stuck on waiting lists. We needed to learn the system. We needed to learn to fight for our son.
Then there was the echoing crash of the ceiling coming down, bit by bit. That was the unrelenting emotional impact. It didn’t fall down at once. No, little things chipped away at it, piece by piece. Looking up the genes he was being tested for and reading what they meant. Screaming at Little J to breath when we found him, chest motionless, movement monitor alarming due to central sleep apnoea - something we didn’t even know he had. The Registrar at the hospital furrowing her brow and opening her mouth to say something upon hearing he no longer babbled; then looking at the Consultant and deciding it wasn’t her place. The Neurologist placing her hand on my arm as we got up to leave an appointment – the gesture of one mother to another.
Then there was his pain. My god the pain. I can’t begin to describe what it is like to see your child in agony. There are no words. For eight long months Little J suffered intermittent bouts of full body generalised dystonia. Every muscle in his tiny body would stiffen, his arms would twist back, his feet would claw. Imagine a cramp, times it by a hundred and you are getting close. It was enough to make an experienced nurse on the children’s ward step back with dampening eyes and comment on how hard it was to watch. It happened twenty times a day, for around two minutes per time, for eight long months. There was a time last year when I would struggle to walk down the street without having to stop and pull him out of his buggy as he shook in pain, mouth open, unable to get the scream past the contracted muscles. Oh, and there was no guarantee that we would ever find any medication that could help. Especially as no one had the faintest idea why it was happening.
When I have days of fear thinking about development or disability, I remember that time. Because right then, I really didn’t care about anything else. I didn’t care how disabled he would be. I didn’t care if the rest of my life would be spent caring for him. The only thing that mattered was getting him out of pain.
Amazingly, that is exactly what happened. I can’t say that he never experiences muscle pain, but we are 90% of the way there. Our neurologist found the right medication and even she is surprised at how effective it has been. I have read a lot of stories about movement disorders and I know how lucky we are, particularly without a guiding diagnosis. We won the trial and error medication lottery – although we had a fantastic doctor picking the numbers for us. As a result, Little J’s development is progressing ever so slightly. In fact, I feel a whole new wave of positivity about his development. Whilst not all of our test results are in, I see this is a good sign and I now feel it unlikely that his condition is progressive (yes, that may be folly and I am far from medically qualified – but just go with me on this one.) He is social, happy and suddenly much more interactive. The world is looking brighter. We are so much stronger. We are able to accept that our lives will always be 'different'. Thanks to my hugely supportive employers I am even able to think about returning to work. And what’s more I feel excited rather than worried.
But there was a big journey to get here. A major rebuild had to take place and SWAN UK played no small part in it.
When you have an undiagnosed child, there is nowhere to ‘fit’, no one to ask questions to. When we came home from hospital, floor well and truly removed, I spent a lot of time scouring the internet. I flirted with joining some groups. I stood on the sidelines of Special Needs forums and read what was being said. But I couldn’t fully interact. I couldn’t engage. I couldn’t comment on a specific condition that Little J was being tested for, as I didn’t know if he had it or not. It seemed rude, insensitive to those families who were living with that diagnosis. With nowhere to belong, raising a disabled and medically unpredictable child can be a lonely road. Not in terms of friends or family, who do all they can, but just in terms of having people who understand the ins and outs. People who can signpost you to the right place, people who can answer obscure questions about which posturally supportive pushchair is best and who don’t mind a lengthy chat about the implications of low muscle tone and the lower digestive system (work it out.) People who, despite their own structural collapses, take time to bring the ladders, bring the cement and tell you how to put your house back together again.
It took me a long time to engage with SWAN. I first heard about them during my frantic Googling in hospital. That was in April last year. But it took me until December to actually get involved. Yeah, I know, I don’t really know what’s up with that either. The membership form sat on the table, slightly wrinkled, with an increasing number of coffee stains. Perhaps it was because I felt that by declaring Little J ‘undiagnosed’ I was giving up. Perhaps I was still in denial. I don’t really know. I should know better. Working in the voluntary sector, I know how amazing charities can be. Whenever I meet someone affected by a condition or cause, my instant response is to urge them to engage. Well it turns out I am a massive hypocrite.
What actually got me there was finding one of the SWAN blogs. I started to follow it. I recognised so much of what was being said. It resonated with me in a way that no amount of charity marketing materials or website content could. I never expected to end up blogging myself, but remembering this spurs me on when I get a bout of nervousness about putting our lives ‘out there’ so much. I can’t think of many charities that have so many dedicated bloggers. As I have read more and more, they have helped me to know that we are not alone. That there are others experiencing the same things. The SWAN online community has also been invaluable in this respect and we even had the opportunity to meet other families at one of their meet ups. As time has moved on, we have become less and less isolated in our position. Most of all we finally see something. We see that it’s not just us. Because when the doctors are totally unable to tell you what is wrong with your child, it just all seems so surreal. So statistically unlikely. You start to think that you must be the only ones. But you aren’t.
And so as time has gone on, things have stabilised. We are more ready to face what’s ahead. The fabric of our lives has changed forever, but we are moving forward. The raw materials have changed, but more walls are being rebuilt, getting higher each day. Other charities have played a huge part in this, offering advice, funding sensory toys and even lending us a pushchair. We are eternally grateful for this and when I think about how we found these organisations, it is almost always thanks to SWAN. These organisations have contributed massive supporting beams to our rebuild, but it is SWAN who put up the scaffolding.
So, here we are now, increasingly positive, increasing accepting of our circumstances. Things will change; some walls will fall down again and need repairs. That is simply the reality of life with an undiagnosed child. But the inevitability of this feels a lot less ominous now. Now that we know there are people with the knowledge and sheer good will to help. Our structure may be a little wobbly, at the mercy of unpredictable and ever changing winds. But when it really comes down to it, the foundations are pretty damn strong.
Interested? Want to hear more from other SWAN families, why not click on one of the links below.