Assault on The Ben

So they did it - Tom's Grandpa Will organised an assault on the summit of Ben Nevis in aid of the Meningitis Trust and they all made it unscathed. That's snow on the ground you can see but still proudly wearing short sleeved T-shirts emblazoned, if you look carefully, with Tom's grinning face.

So enormous thanks to (from left) Stewart Hamilton, Will Adam, John Kerr, Ken Gouge and Aubrey Harris. The guys raised over £3,200 which is one heck of a feat!

We're proud of you guys.

Sports Day

I must admit to not being fully prepared for Tom's Nursery Sports Day. It was only a matter of hours before its start that I even considered going but thank goodness I did. I could dress this post up in so many ways and the sports day would serve up the necessary material in spades.

Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:

These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.

The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.

Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.

I had time to enjoy that... seeing as Tom had creamed everyone in that race.

Did I say it wasn't competitive?

Please note the 'Tongue of Concentration'.

Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.

So thank you James Peacock School, Ruddington. We will miss you.

Of charities and web friends

We received a parcel this morning from an internet friend called Kristin. We share a hobby, nay mild obsession, over at IgoUgo , a travel community website where we contribute travel journals and photos. It's a bit like Trip advisor or the Lonely Planet website (or the many others out there); ordinary travellers write reviews of places they've been. The difference with IgoUgo, to my mind, is that extended 'articles' are encouraged through financial rewards, competitions, annual awards and the like. It's a cool site and you'll find Kristin there as 'stomps' and me as 'jaybroek'.

That was all a very meandering introduction to the real thrust of this post. If you follow the links and read some of the journals then great but more to the point, I've got to know some great people through IgoUgo, many of whom have been very kind and have sent supportive messages over the past year or so. Kristin has gone some distance further than most. Last weekend she took part in the Three Peaks Challenge, raising money for the meningitis trust, a charity that, not so coincidentally, have been a part of our lives during the past year. We have been the beneficiaries of financial and counselling support from the trust; support that has been a vital part of Tom's and our recovery.

Now I'm pretty certain that Kristin was going to tackle the challenge before she read about Tom but it is wonderful to know that she took on the peaks with our son in her thoughts and those of her fellow walkers. Each person on the climbs carried with them a pebble, engraved with the name of a meningitis survivor and Kristin's carried Tom's name. She also took with her a couple of T-shirts; one for Tom and one for herself. It was the shirt for Tom, now signed by all those involved, that arrived in the post this morning and was the cause of a tear or two.

So there's hope for mankind with the likes of Kristin amongst us - people like her keep on doing special things for people like us, regardless of whether she knows us or not.

Thank you Kristin.

Everyday thoughts

Last night Tom threw an almighty tantrum. It’s hardly surprising, he is two after all, but they are fairly rare and, in our sensitised parental state, we tend to pick over the aetiology of the tantrum, catalogue its cause and symptoms and then do our damnedest to avoid it happening again.

Because tantrums suck.

This one was my fault although, in the no-blame culture that pervades our house (really? OK, no overtly allocated blame then), there were many contributing factors that could be identified. Tom was exhausted when he got home from the childminder, whose daughter had plied him with chocolate just before he left, and, consequently, he was a greater pain in the butt at dinner time than he normally is. I love this pain in the butt, you understand, but his utter disinterest in meals until the ice cream comes out drives us to distraction.

So far, so toddler. So far, so normal family. The boy’s pooped (he’s decided that he’s not napping during the day any more), has just got home and wants nothing more than an opportunity to play in ‘Tom’s house’ while his parents, a little strung out from their respective working days, want to undo the dietary damage done by other people feeding our precious firstborn and assuage some standard, two working parents guilt. We get through it without redecorating the floor.

So we move on to bath time and everything starts to unravel; the tantrum kicks in, the snot starts to flow and… we have our most stark daily reminder of Tom’s deafness. What is a straightforward refusal to remove an item of clothing becomes infinitely more difficult to deal with, for me at least, when the item in question is his implant processor harness and the accompanying coils that enable him to hear. Refusal to remove a shirt is just a two year old who has lost his ability to understand; refusal to remove his hearing is something far more profound, whether it’s a mere extension of the stubbornness or not.

Last night this was compounded by Nik’s discovery that Tom’s right implant wasn’t working and, presumably, hadn’t been for some portion of the day. We know he can hear with his left implant, it was tested only last week, but listening with only one ear is incredibly tiring. The extra concentration required is enormous and must have contributed significantly to Tom’s fatigue and mood.

The battery in the right processor was flat – a development we hadn’t yet encountered. I instantly knew why; I had left the processor on the test setting overnight and, although I’d noticed in the morning, I had been in a rush to get Tom dressed and out of the house and had treated it with a laissez faire, ‘it’ll all be OK’ attitude that I would to dressing Tom in yesterday’s vest or forgetting his gloves.

I thought that attitude had gone when Tom had contracted meningitis… and certainly would never be applied to anything related to his hearing. Yesterday evening when all the crying was over and the boy slept, and now again when I write this, I was drawn back to the painful days when Tom was ill and I was reassuring myself and Nik that it was just another childhood bug, that all he needed was Calpol and an early night. And that is a place I don’t like to go but this stuff is all still so close to the surface. My coping mechanisms are good, most of the time but, given an opportunity to introspect, I leap at it.

Take this, seemingly innocent example. Checking on Tom when he’s asleep is one of the evening’s little luxuries that Nik and I share. Then one day she asked me:

‘Do you like this so much because he hasn’t got his processors or glasses on?’

How about that for loaded? Our angel, just as he was before all this happened, not how he’s going to look day in, day out for the rest of his life. How are we going to help his self-esteem if, deep down, we still linger over the gadget-free pre-meningitic version? It seems that every way we turn; every preference we show is entrenched with hidden meaning.

So – getting back to where I came in - avoiding this sort of tantrum and this sort of journey into the recent dark past is based on good battery management. Remember that.

Is this really the best way to run a health service?

I have been striving to achieve a zen-like state since Christmas. I have has lots of sleep - Tom has developed a penchant for lying in until after eight o'clock - and feel like I can face the world with a degree of calm and a level of rational thought that tended to escape me in 2006.

Then I watched a report about this on the BBC this morning, described on their website thus:
'Controversy over child referrals'

GP's here have been sent a letter detailing the cost of referring children to the local hospital.

It asks whether any of this could be done more cost effectively.

The letter says the trust spent £1.5 million referring children to the local hospital last year

It points out that 79% were discharged within a day and goes on to say "this area of activity was one which was likely to achieve cost savings"

It doesn't take much of a leap of imagination to take the same view as GP Eric Rose, quoted in the article as saying:

"I think if you're fairly new to the job, you're impressionable, you're given the impression that you're referring unreasonably - you might think again."

"I think it's potentially dangerous. It would only take one child that should go to hospital not to be sent to hospital and for there to be a tragedy and I think there would be a lot of questions asked."

I wonder if something similar had been received by our GP. We took Tom to him the day before he was admitted to hospital with pneumococcal meningitis.

We were sent home.

Depending on your measure of a tragedy we either narrowly escaped one (our boy is still here) or fell victim (he remains profoundly deaf) in a manner not unlike that described by Dr. Rose.

A measure of balance (one that drives my wife a little bit mad) reminds me that meningitis, along with many childhood illnesses, is notoriously difficult to diagnose - there are enough desperate stories of children dying after misdiagnosis in paediatric A & E departments to illustrate that - but does putting pressure on GPs to think financially as well as medically when making such decisions really make sense... to anyone?

Back to the old routine

Another day, another milestone...

Nik returned to work today for the first time since Tom contracted meningitis. It hasn't been the most pleasant of transitions for her as one might expect; there's enough personal and societal guilt tied up with being a working mother (however hard we try and rationalise it all and however much people think things have moved on) and putting our son into childcare without the added complications that prolonged illness and deafness bring. Jeez, there's a whole separate blog and debate just there. Anyway, we won't open that one up too far just now.

The return to the childminder (Karen) has been phased over the last few weeks, ostensibly for Tom to get used to spending time with her again but also to allow Nik a little down time. As it is, appointments, letter writing and filing (Tom needs a full time clerk to manage his correspondence) have messed up any chance of that happening. Couple that with the fact that the boy has cried his eyes out at the mere mention of Karen and you can begin to imagine how stressful ths period has been.

Yes, more stress.

But today Tom defied all expectations. I told him where we were going once he was belted in 'daddy's car' and, although he wasn't his usual, van-spotting ball of chat, he took the news well. It seemed a particularly adult, stolid reaction; he bore the bad tidings and, although clearly not over-enamoured with the prospect, he was resigned to the inevitability of it all. His only words on the journey were 'Daddy sit down Karens'.

So there we were a few minutes later, daddy sat down as requested, with Tom standing close. Then, having decided he was ready, Tom said 'daddy work, daddy's car'. I was dismissed - 'Don't drag this out any further father, your work here is done'. He was so brave, I nearly cried.

Naturally, Nik thought I was just making it up so that her first day was less stressful. Work still sucked but, hey, that's work for you.