Tuesday, 30 September 2008

Bouncing off the ceiling

I’ve been bouncing on the ceiling – not necessarily what most people would have thought I was doing following an appointment at Addenbrookes with The Boy – but what I have done nevertheless.
It’s been one of those weeks – gone in a blur.
I can’t believe it’s been only seven days since Dear Charlie and I argued our way into Addenbrookes in Cambridge and took The Boy to see the specialist about his blanking/absence seizures (Petit Mal)
The Boy had a great time on the Super Mario giggling and laughing for most of the time -infectious little scamp. Unfortunately the same could not be said for me. I was grilled. I was rather taken aback and felt very small and stupid – I actually admitted to it. I blame it on the specialist’s bedside manner that got me that had me blurting out truths I thought I had hidden from the whole world – I am an unobservant mother.
It was just like those dreams you have when you are happily doing something usually in a school/office scenario when you suddenly realise you are stark bullock naked – it felt just like that: exposed and rather chilly.
Of course the specialist was just doing his job and getting the facts. Absence Seizures are tricky little things and of course The Boy’s ones would be atypical wouldn’t they? I felt I was being asked to justify why I was having the appointment. First I was told that what I described about the blanking was wrong, then the history was incomplete, then that teachers had a tendency to blame lack of attention in class on absence seizures and was I sure.
My brain always has a problem when too much information is heading my way especially when it seems to be coming across in an aggressive manner. My tongue sort of curled up and any connection between it and my brain was lost in translation and I sort of stumbled out my answers feeling like a total idiot.
In a nutshell The Boy zones out for a few seconds frequently during the day. You can’t snap him out of it by shouting at him – he just does not hear and when he comes back he usually looks at you as if you are quite bonkers as if to say: “Why on earth are you calling my name in a middle of a conversation?”
Usually he continues where he left off, sometimes in mid sentence. Other times he looks quizzically at you for guidance as to what he was doing or talking about.
I’ve seen him blank riding his bicycle and going right over the edge of our deck without noticing. That meant he dropped some 2ft to the ground. It was bit of a shock I can tell you and required lots and lots of cuddles. Both he and bike were fine thank God. But it certainly put me on alert as he could quite as easily tried to go across a road in front of a car!
For a long time I thought it was because he was tired, or that it was to do with growth spurts, as I would only notice them occasionally at supper time or if we were talking. Since the longest is only five seconds and the shorter ones merely a heartbeat I suppose it was amazing anyone picked them up at all.
It was picked up in Nursery when he was just four but didn’t get noted in his Reception year despite me asking for it to be monitored. His form teacher wasn’t exactly concentrating and I have yet to get to the bottom of that one – suffice to say I will be having a written explanation from the school for the specialist as I was definitely noticing the absences at the time but putting the symptoms down to tiredness at the end of a school day and the ones in the morning to having to get up too early!
It was his Year One form teacher who brought it up with me at the beginning of this term; she’d seen something similar before in a young boy, which turned out to be Absence Seizures/Petit Mal – I was so grateful that she’d noticed and that it wasn’t just me. But I also felt so completely stupid for not going with my gut feeling – I knew something was wrong. Perhaps I was too scared to find out.
So that left me in a small room being bollocked – well not exactly, it just felt like it.
Luckily I was informed that the specialist always kept an open mind and in the way that spoke volumes for similar treatment for weeks to come we were whisked into making an appointment for an EEG.
Which is where The Boy and I have been this morning but still doesn’t tell you why I’ve been bouncing off the ceiling.
The Boy was brilliant and liked the idea that he would have wax in his hair: “Just like a rock star!” he says to me.
He is lying on a trolley bed propped up and both neurophysiology technicians are attaching wires to his head. They chatter to him and he to they in a non-stop sort of way pointing out the pictures in the room, the panic button, the lights, and all sorts. They talk about his school and his mates and what he likes to do.
Then he’s asked to shut and open his eyes, to look at a flashing light and to blow on a windmill to make it spin.
I notice he blanks a few times during this and am glad that the whole session is being recorded – at least there will be proof now. Then suddenly he flops eyes glazed and it’s not a few seconds this time it seems to go on for ages but I’m sure it was only really about 10 seconds. My heart leaps to my mouth and I make a move towards him to gather him up, to protect him. Neither technician seems worried and The Boy perks up again unbothered. It takes a while for my heart to stop racing.
He spends ages choosing his badge at the end of the session and then we sneak a hot chocolate and brownies in the canteen before returning to normality.
His return to school just before lunch is worthy of the rock star he wanted to be earlier. There are a babble of questions and suitable gasps at the answers. I wave him goodbye and return home to work.
There are a lot of e-mails and as I go through them I come across a name I don’t recognise. I open it and there it is – we’d like you to join our team to run in the Flora London Marathon 2009….I’m bouncing off the ceiling with excitement – this is like: Hey WOW!!!!! Now I can do something – I’m going to be raising money for Epilepsy Action

Wednesday, 17 September 2008

Just another excuse...

Everything is grinding to a halt and all the things that do need doing are not being done and all the things that could be left, or are of no tactical advantage, have become incredibly exciting and I have to do them NOW.
There are drifts laundry under the stairs, unopened post dumped in mounds on what is left of the kitchen table, dust bunnies are breeding and as for work – forget it!
Hands up - I am not the most organised person on the planet. As Dad would say I couldn’t organise a piss up in a brewery. I freely admit that - so what is causing the stoppage: The Boy.
To put it more accurately I am in full flooded worry mode after the news that The Boy has Petit Mal – well the GP is pretty certain that it is and now we await our first consultation at hospital to find out how to deal with it.
My mind is so full with questions and concerns and so scared that I cannot articulate any of them. I know from Googling that it can be treated easily. That it is more than likely The Boy will grow out of it. But I can’t help feeling worried – an unspecified worry that niggles all the time.
The day after the news, even though I shed not a single tear, I felt as though I had been weeping constantly. I was exhausted.
I felt frustrated that I could not get it sorted out at once and being told initially that I would have to wait 60 days for a first consultation had me spinning almost out of control.
I don’t want to have too much information before the first consultation in case I start to take issue with the experts – which I understand is not the best way to get them on side. Nor do I want to go in a total ignoramus - so betwixt and in between I sit. Do I or don’t I?
And it’s spreading into the other compartments of my life and I feel a bit like the Titanic about to go down with the bands still playing.
I spent the whole of Friday begging various Epileptic Charities to take me on for the London Marathon via a series of e-mails and slightly mad telephone messages. It just seemed the best way I could do something, the best way to keep myself occupied enough so I wouldn’t cause confusion in the household before the weekend.
All of them were delightful and if they were slightly bemused by being bombarded they took it in their stride. I do hope I get chosen – it would keep us all amused if nothing else this winter.
Or is it just another excuse to be disorganised?

Monday, 15 September 2008

Having a good (clean) laugh...

I suddenly have a boy not a little boy or even an overgrown toddler but a boy. He has put aside babyish things and now spouts forth to all and sundry everything to do with bottoms.
Ah yes you all murmur with varying shades of embarrassment – lavatorial humour. Please when do they grow out of it?
The mere mention of bottoms, farts, pee and poo send him into paroxysms of stifled laughter. Sometimes he’s helpless with giggling too much and has to resort to shaking silently on the ground curled in an almost foetal position.
The best thing to observe is when he’s in a gaggle of his mates. You can see them egging each other on to say the MOST outrageous thing they can muster gaining particular kudos if it is overheard by an adult.
It bursts forth from them and is immediately rather unsuccessfully stifled by a hand. If admonishment is forthcoming it seems to make the situation worse with added spluttering and choking and in the face of that you know you are lost.
You can see the little blighters strut off like bantam cockerels all puff and pride buoyed up with their victory. You shake your head in secret admiration.
So instead of confrontation how’s about out bottoming them?
Please note this is not to be done when the headmaster can over hear you ‘cos in mid flow on the lavatorial front suddenly The Boy went very silent and I well I carried on until realisation dawned that I was not as alone as I thought.
I turned stricken to see our glorious head standing behind me arms folded.
He: Most enlightening!
All I could do was glow head to foot with embarrassment I tried to say something but instead all I could do was start to giggle. I felt that the situation called for a hasty retreat and The Boy and I bundled ourselves into the car tout suite bright red with embarrassment stifling our laughter as best we could.
It was great to be on the winning side!

Go on you know you want to...


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