When things regularly go wrong and you feel like you are often taking one step forward and two back, it can be difficult to feel optimistic when things start going well. It’s not that I don’t appreciate the good times; it’s just that all too often they get snatched away just as we’re starting to celebrate. It feels safer then not to get too optimistic, not to let myself get too excited or happy because it’s a long long way to fall when our world come crashing down again.
Sometimes I feel that I might be ‘jinxing’ things too. When you have so little control over your situation, inevitably I suppose you start to become superstitious. I touch wood, say ‘please God’ after just about everything and I don’t like to talk about how good things are in case, in some cruel way, fate decides to try and teach me a lesson for daring to get too cocky. Just look what happened last time: here’s me getting all excited and here’s me getting myhopes dashed spectacularly. See what I mean?
So, without wishing to piss off fate too much, and without wanting to appear too cocky or get too optimistic or excited, I will share with you some
wonderful, amazing, fabulous news.
LITTLE H HAS BEEN SEIZURE FREE FOR OVER 9 WEEKS!
Eek – sorry, did I just say that out loud?
Too bloody right I did!!!! I am fit to burst. I can not express just how excited we are, how wonderful this is and how much our lives have changed in that time. Dare I say it – we’ve had quite a ‘normal’ family life. We’ve all been to my mum’s for dinner; we’ve been to two Christenings as a family, we’ve been to the pub together and gone and fed ducks in the park. All four of us – not just one parent and Cheeky while the other stays at home with H. All four of us. Together. I’ve driven in the car with both boys. I’ve been to the shops. I’ve taken the boys to a sensory room – together. We’ve made plans, sometimes days in advance – something we’d never normally dare do. Hundreds of every day things that most people take for granted, we’ve not been able to do because the seizure monster has been there, lurking, waiting to bring us down at every opportunity.
But not any more. H is twelve weeks into the ketogenicdiet. We seen the neurologist on Thursday and he is delighted with his progress. If it continues we can start to wean him off the crazy-strong anti-epileptic drugs in six months.
Imagine! A life without seizures? It’d be a feel good Friday every day!!!
If Fate or the Mr. Evil Seizure Monster are reading this, I would like to point out that we are still in awe of your power and realise that you could at any time pull the rug out from underneath us. We appreciate the break you have given us and are in no way over-excited, ecstatic or any other such silly emotions. We do of course remain ever at your mercy.
Feel Good Friday – is a weekly celebration of the achievements of our Swan Children (Syndromes without a name). It’s a lovely way to ensure that we always look at the positives, no matter how difficult the week has been. You can find out more about Swan by visiting their website, finding them on facebook or following on twitter. Hayley Pelham – whose wonderful idea it was to do this each week – can be found on her blog here or on twitter.
Similarly, Tricky Customer’s Celebrate blogging challenge encourages us to celebrate the good things each week in the rollercoaster world of special needs so I’ll link in to that too.
cunningly I am also linking this post in to the #definenormal blogging
challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate.
Now if only I could link it into #specialSaturday too and I’d be on to a winner!!!