Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

Feel Good Friday - 9 weeks and counting!!!


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!!!

Disclaimer
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.

And rather lazily 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!!!

Comments

  1. Fantastic news. We've never tried the ketogenic diet. Not sure why it's never been suggested. Funnily enough though, Chrissy had no seizures on the casein & gluten free diet - but it had to be stopped because it also caused anorexia. Can so relate to how wonderful it feels to do those everyday things like taking our child to the shops! Long may it continue x

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  2. I saved this up to read and I'm so glad I did :D Really wonderful news and I also know how good it feels to do ordinary everyday things that other people take for granted xx

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  3. Oh wow, this is such great news. I hear the ketogenic diet talked about a lot, but don't really understand why or how it helps. I must research it. I'm (very quietly and non-cockily) over the moon for you guys.

    I hope that means that you are considering the SWAN meet up as a possibility?

    Oh and I linked up my latest post on the bloghop, it's my kind of being positive, which might be a bit weird, but that's the only way we do it!

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  4. You know I am so delighted for you, well for Huggable Hugh mainly. But I'm also delighted in quite a selfish way because it gives me more hope it will work for Samuel. Well done H. But well done to his mum too! Here's to our KetoCal Kids!!

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  5. Fantastic news. Here's to the next 9 weeks! :)

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  6. Thank you all for taking the time to comment - sorry fort he delayed response.

    Jane - yes, the normal things make all the difference. Yesterday I took the two boys to tesco, on my own, for the first time since last summer!!

    Looking For Blue Sky - I think perhaps it makes us appreciate those things that little bit more as well.

    Thanks Renata - Matthew's Friends is a good place to start if you want to know more. Even the experts aren't really sure how it works, but the fact that it does work is the main thing!
    Thanks for linking me in. And yes, hoping that the Swan meet up is a possibility. Involves being brave enough to tackle long distances on a motorway with H so we'll need a good long seizure free period to allow us to risk that! Fingers crossed. xx

    Tricky Customer - I know. I soooooo sooooo hope it works for Samuel too.

    Psychojenic - fingers crossed/touch wood/ please God etc ....

    Sally - Thanks xxxxx

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