Monday 10 October 2011

Freddie Fernie comes of age (not really)

So, now both our boys have been christened. As I said in my little speech yesterday, we're not particularly religious but we are traditional and a church is the best place for a christening. I'm certainly not into 'naming days' but they do seem a little less hypocritical.

I think I wrote somewhere on this blog before that before our wedding Clare and I went to hear our bans being read in the run up to our big day. Clare's point of view was that we didn't want to appear hypocrites by getting married in a church just for the sake of the photos, but my contention was that by going so as not to appear hypocritical was more hypocritical in itself. That there should be no other purpose to going to church than the natural will and wanting to go for whatever purposes, spiritual or otherwise. Otherwise, other than for a contrived purpose.

Anyway, I felt it was a nice thing to do for the people who do go for the genuine reasons; lots of people get an awful lot out of the church it's central to their community and indeed, their week is structured around it. So, going for them, I thought was enough.

And actually, this church is a place which holds only good memories and it is an uplifting place. It's equidistant from both sets of our parents, we got married there, Jake was christened there and yesterday Freddie was christened there. It's always been great weather and we've had three lovely days with our nearest and dearest.

So yesterday Freddie, he of the far less dramatic journey to planet earth than his brother, was christened at St. Mary the Virgin church, Headley, Surrey. He looked so cute wearing Jake's hand-me-down christening get-up and looked for the first time, less like a baby and more like a toddler. Also, he's pretty massive and the main comment was how big he is! On Saturday at a kid's party we went to, a lady came up to me and asked if he was 'about one' and was surprised when I told her, 'six months'. Anyway, big is good, big means eating lots and he eats A LOT, so all's well there.

Lastly, a nod to Jake, my best mate, who is so much fun. Unlike some dads it took me longer to fall in love with my kids, of course the love was there immediately, but what I mean is, it took me longer to become a kid-type of guy...the type who rolls around on the floor and play for hours on end. Of course I do those things, but before it was out of a sort of sense of duty. Now I want to and it feels natural. And I'm so glad of that transition as I felt I was lacking something...o.k. probably over-analysing but you question yourself more as a parent than ever before and it's great I feel the way I do now.

For the first time, I don't want Jake getting any older. He is a perfect mix of communicable, cute, innocent, playful and loving and I know that he'll soon answer back and the inevitable tantrums will start. He goes to pre-school four mornings a week and it's crazy to think that there's a part of his life which we don't fully know every detail of. The other day he came home and said 'bonjour Daddy'. Which is mental really. You'd think they'd concentrate on English before moving to foreign languages but what do I know!

Have a good day all.

Friday 23 September 2011


Anyone who has read this blog from the beginning, or at least from when Jake was born will know where this post is going.

Before he was born I was mostly worried about sleep deprivation. The one thing which all new parents have in common is the fact that they will sleep less. Fact.

Even if you're my friend Ben who is able to sleep, ear-to-mouth next to his crying daughter, you'll still at least notice changes to your sleep.

And then you notice it less and less. It's not that it gets easier, you simply adjust to your new default. Like your settings have been tweaked to allow you to perform tasks previously only acheivable after eight hours of unbroken sleep.

I'm convinced that's why people start to look their age in their thirties. Bags under the eyes, greying hair, a shortened temper, increased alcohol comsuption and a general sucking away of joie de vivre!

Those who know me will tell you I like to moan, I have something of a reputation for it now. And I play up to it mainly for comedy effect but the main cause of it all is the ongoing torture which is a lack of sleep.

Over the last week, Freddie, who has been an angel in terms of sleep since birth (and by angel, I mean only wakes once a night at around 4am and often sleeps through until 6), has decided that he should buck the trend of sleeping more since weaning. People will anecdotally tell you 'they'll settle down once they start eating....I'll all get so much easier'. Well, you know what? It hasn't got easier. Unless by easier you mean, wakes up every two sodding hours. And whilst this has been going on, Jake's decided his room is full of monsters. Ridiculous I know, but try telling that to a 3 years old in the dead of night.

So we had a week of both children awake in a zip-like fashion where as one went back the sleep the other would wake and cry and then scream. Honestly, I think I'd prefer waterboarding.

Anyway, night before last Jake slept through and last night Freddie went back to just waking up once. Just as soon as they coordinate their improvements life will return to normal.

Yes, I know everyone goes through it but until both children sleep from 7 to 7 99% of the time, I'll continue to moan and write about it.

I'm pretty tetchy today.

Wednesday 21 September 2011

Watch This Video...

Although I'm a supporter of The Smile Train, there are lots of other very worthy cleft charities who do great work. And in fact The Smile Train was formed after its original founder, Brian Mullaney had worked with Operation Smile and felt that perhaps there was a better way forward.

Coincidently, Operation Smile's UK HQ is based on the same small business park as I work on in Fulham and they recently put out the video below on YouTube.

Check it out. I defy you not to smile, it's a great way to start your day.

Friday 9 September 2011

Do not terminate your pregnancy because of a cleft!

Since 2002 there have been 40 pregnancy terminations in the UK after a cleft (lip and / or palate) was diagnosed. 7 in 2010 alone.

So, for anyone that made that unspeakable choice and, more importantly, those less selfish people who've had 'the news' and decided rightly to crack on, here's a photo I took yesterday of Jake on his third birthday.

Looks alright to me.

For balance, here's a photo of Jake at his most clefty just in case you think his was one of the subtler kind.

As you can see, the cleft is all the way through his lip and the right side of his nostril has collapsed because there's nothing below to support it. What you can't see is that the cleft goes through his gum and all the way to the soft palate at the back via the hard palate at the front.

Whilst the lip will initially be the most worrying thing as it's so visual, the palate is perhaps more important. Since having Freddie we've realised that perhaps Jake's cleft did affect him more than we were told it would. For starters he cried a lot more, slept a lot less and drank milk so much slower. Then weaning took forever. He was our first so we had no frame of reference but compared to Freddie, who in his second week weaning, eats more than than a small horse, Jake obviously found it much harder going. To be fair, he had a bloody great hole in his palate which can't have helped. Anyway the point is, he had that hole fixed and eats like crazy now.

His speech is fine and improving all the time and he's a brilliant, healthy, happy and handsome boy (obviously :-)).

We never for one second considered the option of 'getting rid' of him, although amazingly it was referred to as a possibility. I can see how either the very young, poorly advised, naive or vain might consider it, but I think it's unthinkable.

And I'm not anti-abortion. I'm very much pro-choice as long as it's done in the right spirit if that's the word. If you asked my advice had the news been cerebral palsy or even spina bifida, I'd probably say that you'd be better off thinking about yourself and how you'll cope. There will be people who've nobly gone through with having babies knowing that they'll have serious mental and physical disabilities, who have coped well and whose children will have lead as fulfilling lives as possible. I salute them I really do, but I'm not sure I could do that. I'd feel a martyr and actually I am quite selfish like that. The point is, it wasn't a selfless decision to not abort Jake because it wasn't a decision at all. We were told he'd be born looking a bit different and he'd have a few operations (like most kids will have for various things) and then he'd be fine. And that's exactly what happened.

I'm fairly sure anyone who aborted a baby because of a cleft will have felt guilt about it and, whilst I'm sure they'd justify their actions all day long, I hope they realise, especially after seeing the photos above, there could have been another way. One where an amazing kid grows up before your eyes totally oblivious of the issue he was born with and one where he'll thank you a million times over later that you let him have a brilliant life (with any luck).

This post is in reaction firstly to this post about children aborted for a cleft palate in the Daily crap Mail, but also after an email I received the night before last...

A chap from India emailed asking for advice as he'd just had the scan and received the dreaded cleft news. He was in a hurry as they only had a few days left to decide whether or not to abort. All the medical advice they'd received was to terminate.

And that's the difference between the NHS and poorer parts of the world. That it's still seen, even by educated medical professionals, as an untreatable issue which will cause a lifetime of worry, stigma and ostracism, proves we have a long way to go and just another reason to be greatful for the work that Smile Train does.

I emailed back right away to implore him to keep the baby and tried to explain that all will be well, but also said I wouldn't judge him either way as I have no idea how things are dealt with in India. It's easy for me to dish out advice having received, arguably, the best treatment available anywhere in the world.

Anyway, if you're reading this, I hope that whichever decision you made it works out for the best, whatever that is.

Friday 26 August 2011

Nearly three

As ever, it's been ages since I last wrote anything Jake or cleft related on this blog. I've got a little photo / video idea up my sleeve, but other than that this blog has been neglected.

Again, it's symptomatic of how little Jake's ex-clefts affect us. I do worry about the future from time to time but probably no more than every other parent does.

I've mentioned before that I don't see Jake's lip any more. Well I see it and yes, you can tell he's had an operation bit it's just his face, so I'm not objective, I'm too close. It's only when I see him in a mirror or a photo maybe that I properly see it. Not that 'it's' anything major, but it's there and he'll need at least one more op on the lip before he starts school in a couple of years.

From a speech point of view, Jake's pretty good, his vocabulary is great and he's becoming more and more confident in sentence construction all the time. And he does actually listen and attempt to repeat the words we say to correct him. That's about the only time he listens though! I don't spend too much time surrounded by others his age to compare but Clare seems happy enough. We've got another trip to the speech therapist in a month or so and we'll let her assess him fully. The main thing is that they need to make sure that air isn't escaping through his nose when he talks - they hold a mirror below his nose to do this as he talks - as that would inevitably give the nasal twang which is associated with poorly repaired clefts. Not as pronounced as when a deaf person speaks, but different enough to cause potential issues.

As Jake was born in September, he won't go to 'big' school until he's five. Whilst Clare might disagree, I'm actually pretty glad. For cleft and non-cleft reasons. Firstly it'll give him an extra six months to a year to get good at the things you do first at school...some four year olds, for example, will struggle to stay awake or might wet themselves...and it means we have another year to get his speech as good as possible, have the lip operation and generally grow up a bit. I pray it isn't, but school might be tough for Jake. Again, just as it might be for any child but kids can be cruel and I'm dreading the day he comes home and tells us he was picked on because of his lip. It may never come but it'd be naive of us to pretend it's not a potential scenario at least. And that means talking to him about it all before any such situation should arise. Jake's cousin, who's nearly 4, asked why his lip 'started there' whilst pointing at his scar last week...she didn't mean it as anything other than a general question but it shows that, even at that age, they are aware of differences. Apparently it's not until they're 7 or a bit older that they start using differences for more malicious purposes.

With this in mind, it'll be important that we talk to Jake and explain it all. Not yet but over the next year or so, so he can see it as no big deal but also that he's been pretty tough to withstand operations at such a young age. Give him the headsup that kids can be cruel and what to say if someone takes the piss. To not prepare him and have his teachers call us in as he's been fighting over it would be more cruel than those calling him names. Equally I think it's important he's sporty...whatever else happens at school, the jocks will always enjoy an elevated position. Even the thick jocks get respect (not that expecting Jake to be thick!)...the acceptance that having a decent right foot or the guts to chuck yourself into a tackle, affords you can carry you all the way from primary school to university. It's like the funny guys who could outsmart the bullies and always got through o.k. Ridiculously, just being clever wouldn't help. How unfair and crazy is that!

Lastly, my main goal is to form a friendship and bond of trust with him so he feels he can tell me anything, good or bad. The stories you hear about cyber bullying are chilling. I know each generation bemoans the next for having it too easy and far too many mod-cons but I do think it's particularly true of Jake's. O.K, so 30 odd years ago I grew up with a VCR and the first Atari, but we still went out on our bikes all day, no mobile phones (you've seen the email viral)...this new generation is uber savvy, perma-connected and there's very little room for innocence. It seems a shame but I suppose there's progress to consider. I'm just glad, I've got a decent handle on it so that when that awful day comes that he asks me for a mobile phone I'll be prepared for what to look out for!

Anyway, that's it for now, I'll post my video montage just as soon as I get round to producing it.

I can't believe the boy will be three in two weeks.