The Last Place

The reason I am running for Young Epilepsy in the Virgin London Marathon 2016. This picture shows my eldest (some time ago) having an absence seizure, which is a type of epilepsy frequently affecting children. My son was diagnosed with Childhood Epilepsy when he was 5 but had been having seizures like this for at least 18 months - wish I had known what they were and got it sorted out so much sooner!

I've got the last place to represent Young Epilepsy in next year's Virgin London Marathon!
I had hoped I would secure the place. I had even prayed, in my own sort of way, but there was enough uncertainty that when the call came to say that I had got the place I was momentarily silent.
Not a natural thing for me - silence.
And then it gradually sank in.
I had got the LAST place.
The full weight of expectation became a reality and I could hardly breathe.
I had got the last place. I was the last person that had been selected to represent them. There were others who put forward their bid and mine won.
This is huge.
Charity places are like gold dust and with nearly a quarter of a million* applying to run next year and approximately 40,000 entries allowed, securing one of those place needs more than running ability.
I had a huge form to fill out  with all my details from why I was running - because my eldest son now 12 has epilepsy - to what  fund raising I had done in the past.
More importantly was how much fund raising I would be doing in the run up  to the marathon. What ideas did I have, what did I think each idea would raise, how I would go about hitting my target of £5,000. It was a kind of risk assessment, I suppose, aimed at testing out my resolve and how committed I would be during the whole process.
The London Marathon is the most successful annual single day charity fundraising event in the world and last year (for the ninth consecutive year running) a new world record of £54.1 million was raised.
No pressure then.
So as well as training for the Virgin London Marathon 2016, I will also be baking, busking, selling,  cleaning, collecting, organising and well, doing anything to hit that target...
I hope to raise more and to that end..well that's another story!

*A total of 247,069 people applied for a place in the 2016 Virgin Money London Marathon following the decision to keep the online ballot application system for 2016 open for five days. More than 55 per cent of the applications for 2016 were from people who have never run a marathon and more than 42 per cent of the applicants were women. In 1981, less than 300 of the finishers were women. More than 100,000 women have applied to run next year. Approximately 37,800 people ran the marathon in 2015 making it the biggest ever in its 35 year history. More than £770 million has been raised for charity in that time.

Depression: What if my children have it?

I got asked to write an essay once on “All about You”. It was for my new form teacher she wanted to know a little more about us. Mine was the only one where instead of saying what my favourite things were and what I looked like I actually answered with what I thought about myself.

It wasn’t pretty reading.

I was 15 years old.

If I had such negative feelings about myself then is it any wonder that I struggle with putting a positive spin on myself now; some 30 year later?

And it has got me thinking about my boys, in particular my eldest.

He lacks confidence. He says to me, on a more regular basis than I like how useless he is and how he wishes sometimes that he was dead (I don’t react well to that particular commentary).

And I worry.

What if he grows up to have depression like me?

What can I do to prevent it?

Could I be the problem?

And what should I do?

The Boy has been dealt a mean hand: Absence Seizures and Dyslexia. It’s a cracking little combo and we took a while to work out exactly what was going on.

For both though my main aim is to get him more confident. Get him to feel good about himself. But boy is it exhausting. Sometimes I want to shake him out of it, make him know what a fabulous boy he is in an instant because then it would be brilliant for him, life would be easy and he would quite literally fly!

Instead though, I try to get him interested in things that he could be good at and bolster him like mad, much to the detriment of my youngest who has to shout for my attention from the side-lines.

I feel so utterly useless as a parent sometimes and I dread the thought that he may develop depression because of me.

Bringing up boys: Shit happens...

...To the nicest people. And shit is happening to my eldest. The one with Absence Seizures.

You’d have thought that the gods would have let up in him. The poor little bugger has been through enough with his epilepsy but now it seems they’ve decided to add to his woes and saddled him with yet another difference: Dyslexia.

It’s not too bad luckily but this beautiful boy, this kind gentle creature seems to be doomed to have to try so hard to get anywhere and I feel it is so damned unfair.

He really doesn’t need this!

I just want life to ease up on him. I just want him to be able to do something without having to jump through all the hoops. He so desperately wants to be up there with all his mates but he keeps falling behind with everything be it football ( which he loathes because he can’t do it) to maths.

I keep hoping the gods have a plan; you know where he’ll need the fortitude he is gaining, where he’ll use the skills he’s been forced to acquire.

And I hope beyond all hope that I’ll be able to cope with it all. I am not a very patient mother, I’m not all fluffy and mumsy; it’s not in my nature and yet right now I feel he needs me to be just that.

Actually if I did do that I’d only confuse him so perhaps we’ll just play chess and eat crisps and I’ll growl a few times in case he thinks I’m turning all gooey on him…

Being a pushy mom...

I know I said I wouldn’t do it. I said I wouldn’t get all pushy.

BUT.

It worked!

Ever since The Boy sobbed in my arms so bitterly disappointed that he’d NOT made it into the B team for Cricket (Bringing Up Boys: The Bitterness of Disappointement)  I swore to myself that it would NEVER happen again. I felt so strongly for him but I couldn’t really make him see that the things you really want you have to fight for.

So in the Summer I was determined that by hook or by crook he’d make it into the Hockey B team come the Autumn. So he was made a member of the local Hockey Club, enrolled on a couple of hockey courses along with a whole host of other kids and dropped off to do it all by himself.

He was brilliant for I know I would have kicked up way more of a stink at his age. Didn’t seem to turn a hair and by all accounts loved it. I think the best thing about the courses was that parents weren’t allowed to hang around. I do remember the headmaster’s wife once saying to me that in another life she’d quite like to come back and run an orphanage. She explained: “The kids are wonderful; it’s the parents who are such a pain!”

Anyway, last Sunday when I stayed at home to work The Boy, Bog Boy – his younger brother – and Dad went off to Hockey Club. On their return I was told that The Boy had spent the last part of the training playing a hockey match but all he had done was wander up and down the pitch with his hockey stick over his shoulder and trotting after his father to see if he could play with his younger brother.

I blew a fuse.

I got so upset I had to sequester myself in my office and try to focus on work.

I was still angry on Monday morning.

How in the world could I get this boy to focus? To wake up! To understand!

Still mithering about it  and snapping at the same time, I managed to get both boys in the car on the way to school and I kid you not I lectured the poor little souls for 20 minutes on the reasons why some people get chosen for teams and why some don’t.

“You have two people both equally good but one saunters up and down the pitch like Dolly Daydream and the other is out there really trying to get the ball, which one is the coach going to pick?”

“The one who is trying.”

Eureka! He’s got it! Yes!

“But Mum how will I know if I’ve been trying?”

How will he know he’s been trying? It dawned on me that he doesn’t know how to try because he’s never learned how. When you have absence seizures you blank a lot all the time only for a few seconds mind but imagine trying to concentrate through that. It would be like trying to work out the lyrics of a jumping record when you only get to hear it once. Concentration is impossible. Without concentration you will find it very difficult to try, because trying requires concentration.

Trying is something you learn, usually when you are very young and as you get older you can try harder because you can concentrate for longer and longer periods. Now that The Boy is on the proper medication for his epilepsy he is beginning to concentrate and so he can now start to try.

But my problem was to explain to him how to try in hockey. No good me telling him to concentrate he needed something more concrete than that.

“You’ll know if you tried hard enough by the fact that you will come back in really hot and sweaty.”

“What even on a cold day?”

“If you try really hard you won’t even feel the cold”

I collected him that afternoon and he glowed with happiness telling me he had come back in to change really hot and sweaty with his hair sticking up.

“I was playing defender with Freddie but then they let me do it on my own and even though there were five of them I still took the ball from them!”

“How did it make you feel?”

“Good!”

I was so proud but beginning to feel a tad uncomfortable. Perhaps he was only saying that so I would be pleased.

On Wednesday, it was hockey again, the last bit of training before the teams were chosen. Up until now I gathered that The Boy had been put in the bottom group for training. It looked like he’s be in the C team again and unlikely to get any Away fixture treats. But The Boy went out there determined to be seriously sweaty. I asked him if he had had a good time.

“It was great Mum!”

This morning he met up with a friend on the way into school and asked me if it was alright to check to see if he had made it onto the team while I put Bog Boy into his class. I cheerily waved him off but with great foreboding.

What if after all this he didn’t make it? What would I do with a sobbing little boy again?

I felt quietly sick as I trudged down the path.

He burst upon me just as I left his brother in the capable hands of his teacher. Flinging himself into my arms he announced to all and sundry he’d made it in to the B team. Oh it was brilliant. Now he could go on away matches, now he could play with his mates, now he belonged so much more. He was just so happy! I couldn’t have been more proud. He’d made that team on his own. “Trying” had worked.

….maybe being a pushy mother can help!

Epilepsy - The art of concentration

Just when I thought we’d got everything sorted about The Boy’s Absence Seizures (one of many forms of Epilepsy) another problem leaps to the fore, the fact that he doesn’t know the art of concentration.

Sounds terribly silly doesn’t it. But imagine if you will having to do a timed maths test or a tricky piano piece for an exam. No problem, difficult but with a bit of concentration you can do it. Now get someone talking to you asking you incessant questions every now and then and you fall to pieces because you cannot concentrate properly.

Imagine if that was your whole life, if you knew nothing else. Just as you are about to grasp the nub of something you lose the plot, you miss the punch line, you cannot concentrate. With Absence seizures your brain stops for a few moments every now and then. You vague out, you are not there, some people may think you are day dreaming but as far as you are concerned no time at all has passed. Life is a broken record jumping about for no explicable reason. It must be very confusing. You have to try really hard just to get along. Now here’s a thing you cannot even try to concentrate because you actually need to concentrate in order to try.

So it’s no use me saying to The Boy: “TRY!” when he doesn’t know how.

So how do you explain the concept of concentration, of trying, to a child who has never been able to concentrate? It has me flummoxed. But I cannot tell you how often you need to try in the course of a day especially when you are an eight year old boy.

His reading is behind as is his writing, maths, all forms of sport everything because of being unable to concentrate and unable to try. Now he’s able to concentrate thanks to the drugs (ethosuximide) he’s on as he no longer has the absence seizures, but he doesn’t know how to apply it. He doesn’t know what to do. Most people learn pretty young that if you concentrate and keep trying you can do things and it comes easily for him it’s like he has spent a whole lifetime of disappointment and has given up.

His teachers forget or else don’t know that this is a problem and get cross with him or else write him off as not sporty, not musical, not arty, not academic. They say he has an attitude, a bad one and gives up too easily. I am saying give him a chance, support him, keep going with it because he’s going to get better and better and quicker and quicker but he needs them to be as enthusiastic and supportive as they would to a child three years younger. It’s a tall order I know, it’s not something that’s on the curriculum and it won’t be easy. It’s something I have to remember too.

Concentration is something we take for granted, we don’t remember learning it, so think therefore that it is easy to learn but as I am finding out it is an art…

Epilepsy - why is it SO exhausting!

For the last two years I have been querying the powers that be about The Boy and his treatment. At first it was a battle just to get them to agree that there was a problem. I was vindicated the ECG proved what I was saying. Then finally getting treatment I dared to quiz that, for two years.

I kept saying that wasn't the treatment meant to stop The Boy's seizures? I never got a straight answer. All I got was scepticism and a supercilious raised eyebrow.

Basically I was not believed. So I noted down and got his teachers to note down all his seizures. Now that in itself was difficult, for it was the blind leading the blind so to speak. I had to learn how to recognise these fleeting passes and then having to teach his teachers how to recognise them. We did it but not without some difficulty. Every one of the staff at the school had to keep watch over him and among a couple of hundred children that is a difficult even at the best of times.

To make matters worse we changed schools and I had to start with my teaching all over again. It was exhausting. Now finally the doctors are taking note especially when faced with all the notes and diaries I lug along with me to every appointment.

Yesterday we spent four hours in the hospital sorting The Boy out and now he's got new drugs to try out and all the note taking and diary keeping continues with me informing all and sundry what is going on. Asking them to look out for odd behaviour in a child that is already odd. To note down things they think might be adverse reactions to his new drugs such as increased irritability and excessive sleepiness and of course to keep an eye on everything else. They are saints and I feel so guilty about making them do this again. I keep saying only a few more weeks and we'll have it under control, I do hope it isn't wishful thinking!!!

The Boy is now taking Sodium Valproate in the form of Epilim Chrono and Ethosuximide in the form of Emeside in the hope that he can be weaned off the epilim once the emeside kicks in. It will take about two months all being well. And hopefully, cross fingers there won't be any seizures for the answer to my question is this: The medication is meant to STOP the seizures from happening at all.

PS ThinkingSlimmer - Not a good day today either I am really pushing the limits, very aware of how I am slipping. . However, still thinking about my food in terms of how much I am eating so hopefully I will count that as a good thing!