Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Shhh... Don't wake the Seizure Monster!

It has been four weeks since the Seizure Monster reared its ugly head in our house! Four whole, lovely, long weeks.  In the 15 months since Little H started having seizures we have never gone longer than 15 days.  Our limit usually is 7 days.  Around the 7 day mark if we haven’t had one, then we start to look for signs (not that we know what they are) and get a bit uneasy, just waiting for the next one.

I debated whether to mention this at all, for fear of jinxing it, but I just wanted to share the good news.  Although I am nervous terrified that the next one will be a BIG ONE – I just can’t help but be overjoyed and astounded at the changes we are seeing in H.

In the past few weeks, he has become so vocal and responsive – I swear he is attempting to communicate with us.  It’s lovely to hear.  And the eye contact is brilliant. He is smiley at the best of times but he is smiling so much more at the right things.  And laughing – he’s even laughing.  But physically his development is coming on in leaps and bounds – he hadn’t spontaneously rolled for months and months and months but now he’s doing it all day.  I can’t turn my back for a minute and he’s whipped himself onto his front – it’s brilliant.  And with a bit of help to get his hands out of the way, he can get back again too.  He’s doing this strange stomach crunching, like he’s trying to sit up.  I think the last time I seen him attempt that he was about 8 months – before the fits had started!  And the delight he takes in achieving rolling over and the determination he has is something I’ve not seen before.  He’s making progress and what’s more, he seems to want to progress too!

Today I took him to a Molly Music session - one of those groups where they play instruments and everyone sings and does little exercises and dances with their children.  I'd brought him to Rhythm Time last year, which is similar, but developmentally I guess he just wasn't ready.  It was a waste of money - he slept through most sessions or was too ill to attend, when he did wake he paid little interest in what was going on.  I persevered, because at least he didn't actively dislike it.  Today's group was for the under ones (he's nearly two, but I thought it would be more appropriate) and he LOVED it!  He watched the puppet dogs, he responsded to the music and songs, he laughed at the hokey cokey and he was entranced by the parachute.  It was amazing to see.  I was sooooo proud of him and can't wait to bring him back next week.

He’s never been one of these children that has hundreds of seizures a day, but when he has them, they’re pretty bad.  Usually he’d have one bad day a week, and a bad day could be anything between 3 and 12 seizures.  It makes me wonder though what they must have been doing to him to seemingly affect his development so much.  In the past four seizure free weeks we have seen so much progress that the thought of what his next seizure will do is quite frightening.  I put much of his developmental delays down to his ‘Syndrome without a name’ and to some extent the powerful anti-epileptic medication he was on.  Since the gaps between seizures were so large, I never really believed they could be affecting him to such an extent and for such a long time afterwards.

We’ve only been on the ketogenic diet a week now so obviously it’s not responsible for the change in the last few weeks.  The ketones in his blood aren’t at the level required yet but hopefully within a couple of weeks we’ll be there. 

And then?  Well, please God, they’ll keep the Seizure Monster at bay.  We don’t want him back.  His absence has been a wonderful blessing.  I am delighted to have my happy smiley son all day long – not just glimpses of him.  I am not prepared to lose him again.


  1. This is amazing news Emma x well done H

  2. enjoy the smiley little H ALL day long... and mr seizure, please go away and don't come back another day x

  3. Seizure monster - love it! Glad to hear your little man is smiling & happy. Never tried the ketogenic diet. Will be interesting to see how it goes x

  4. I know what you mean about being nervous about being too happy about such progress... but (and I'll whisper this) that's brilliant, and long many it continue x

  5. Thank you all for your good wishes and kind words. as you probably know by now, the seizure monster did return, but I am glad that I celebrated his absence and appreciated the difference it made. Still hoping the key diet works,and of course I'll be keeping you all informed, but intend to appreciate the days the Seizure Monster isn't here rather than worry about its return! Well, I'll try anyway! :D


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