Monday 12 December 2011

Jake's 4th Christmas (and Freddie's 1st)

Once again, this post starts with an acknowledgement of the time which has passed since the last. I was always very proud of keeping it so up to date, especially when you think about the millions of unmaintained blogs around. Anyway, when I started there was so much going on, so much to learn and then, you know, we had a baby and there was lots of new stuff to do and then the operations and so on. All of which generated thoughts, feelings and emotions which spawned relevant content to write here. The blog virtually wrote itself.

Nowadays life is just life and rolls on accordingly. Yes, we've had a second, but, thankfully, his arrival was much less dramatic plus we're no longer novices in the child rearing game.

The upshot of all of this is that as you get used to something, smaller things are less remarkable and if you're not careful, life can pass you by a bit. This year was all about stability. I swapped a very lucrative freelance job for a less financially rewarding but more secure role, the house is finished and everything is settled. Perfect for a new baby to arrive. Since Freddie came along, we're back to being knackered, sterilising bottles, changing nappies etc. All pretty standard, routine and mundane stuff. And because of which you find yourself doing less and having less to talk about.

I should point out that Jake did this 6 weeks ago.

I was already in South Africa for a best friend's wedding and Clare, fresh from dropping the kids off at her parents, was sitting on the aeroplane waiting to start taxiing, when her name was called over the tannoy. Thinking she was about to get an upgrade, she got the shock of her life when greeted by a policeman who said,

"Mrs Church, your son is in hospital, please come with me".

You can imagine how she felt. Jake had fallen through the landing bannisters and fallen directly onto the second step at the bottom and bounced onto the first step where a metal strip for the dog guard did its best to give him yet another scar. A horrible accident and taking the call in Cape Town made me feel utterly helpless and I spent the next few days experiencing the mixed emotions that occur when you're away from your nearest and dearest, unable to help at the same time as being with great friends on the happiest day of their life.

Anyway the important thing is that Jake is fine and after some time in hospital, x-rays and regular checks all he's left with is a slight scar which ought to fade with time.

Things are, however returning to normal, the boys are sleeping more consistently (although still not fantastic) and life as a four piece is taking shape. For instance, I also remember thinking a few years ago, how nice it would be to be able to watch a film with Jake. And yesterday our afternoon saw us all in the lounge with a roaring fire, Cars 2 on the bluray player, Clare writing Christmas cards, Freddie playing on the floor and Jake snuggled into me smiling at Lightning McQueen. Granted, Freddie started screaming and Jake wouldn't sit still, but for a good 10 minutes it was the perfect family scene. And it's important to acknowledge, if not cherish, those moments as they can easily flash by and before you know it, your kids have no innocence left and they're busily slamming doors screaming that they hate you.

So it's hard to believe that this is Jake's 4th Christmas and this year, he's fully aware of what it means. He's very excited as you can imagine. Especially when Clare uses her iPhone app to get Santa to call and talk to him. And tomorrow I'm going to his preschool to see his first nativity play where he's a shepherd. O.K, I'd have preferred Joseph, but a shepherd is a weighty part and at least he's not a sheep or a tree. I'm fully expecting him to come over all shy and maybe not even get involved (he refused to play football when I took him to Little Kickers) but all the same, I'm pleased I'll be there. My dad definitely wouldn't have been at my nativity!

Christmas is all about kids, including the big kid in us. My parents have spent most of the year in Dubai and I've missed them a lot, more than I thought I would, and we're all spending the day together and I can't wait.

Friday 14 October 2011

Professor Piet Haers

Piet Haers - the professor

Regular readers will recognise this name. He's the man who fixed Jake's smile back in January 2009.

A man to whom we, and Jake will be forever grateful. Obviously because of his expert handiwork, but also his manner and the part of the astonishingly good NHS machine which kicked in less than 24 hours after diagnosis.

I know he's a professor, but confess to not knowing much more about his actual specialism. Maxillofacial surgery is a far greater subject than just fixing smiles, so any attempt to properly define the qualification which he so studiously trained for and attained would almost certainly underplay such an achievement,

All I know is that he did an amazing job, most professionally and delivered what he said he would. He'll also perform a minor lip adjustment next year and another when Jake's 8 or 9 and hopefully that'll be that.

'Piet Haers' as a search term delivers more traffic to this site than any other and to all those people researching the man who might be about to fix them or a loved one, I'll just say you are very lucky to be in the care of this man. It never ceases to amaze me the work people do. You could earn what he earns (I'm presuming here) as a lawyer, a banker, a busy plumber even but you'd never make the profound differences to individuals and their familes as a surgeon could.

So, for no other reason than it's good to always count your blessings, thank you once more Piet Haers for all you've done for Jake and our family, we'll be forever in your debt.

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.

Friday 8 July 2011

Why I'm glad I started (and continued) this blog

I've said before that I'm not a particularly charitable guy. Sure, I like to do things for friends, favours, lend an ear if someone needs it, but in the main, I'm just your average chap. Nothing special.

The reason I started this blog as I've said many times before, was a way of getting all the emotions out me via the focus of writing it down. And also to help others close to us understand the 'condition' and how we were feeling. Then Jake was born and the cleft didn't seem anything like as bad but I still wanted to write it all down because it was still relevant and despite having to put him through operations, we were new parents and it was exciting. Plus I like writing.

And then I got a thank you email. And then a comment and another email. And slowly it started to dawn on me that maybe, by continuing to write our journey down (and therefore increasing my Google appeal) people who were a little behind us in their similar journey were finding the blog and perhaps getting something from it. I have to say the first 18 months of the blog were much more relevant and considered than the second but it's what's written in the first half which is what people who just got 'the news' will want and need to read.

I've had nice email conversations with people from all around the world and am now friends on Facebook with a couple of them and it's great to see how their lives are moving on how well their kids are doing.

So I never started this thinking it would help anyone (see the point above about not being that nice!) but it's definitely the reason I continued.

Every now and again I'll get an email saying thanks and it breaks my heart to know there are people out there feeling now how we felt then, but if reading my ramblings does anything for them at all that's great.

So I'll carry on if that's o.k. but kids will always be born with clefts and parents will in the main get the news before the birth. And more and more will head to Google and keep finding this blog; and when they read my entries and the selection of emails and comments below, they'll realise that life goes on and these little challenges are just little bumps in the road.

Here's a few of the comments and emails.

"Hi James, Just stumbled across your blog while searching for information on cleft lips & palates. We have just had our 20 week scan and discovered that our son to be (#2) has a cleft lip (palate TBC) and I have so far found this blog a fantastic read. I've only just started (from the beginning) and already feel like it could have been our story you were writing about. Look forward to reading it in its entirety hoping that it will give us some more insight as to what we might have coming up! Thanks for putting it together, so far a great read."

"I came across your blog tonight and found myself reading quite a bit of it. My daughter, xxxx, was born with a bilateral cleft lip and palate. She is now 16 months old. Two months ago she had her third surgery, which was her palate repair. I can relate to so many of the emotions and fears that you had before your son was born. I was so worried about how people would react to her. But once she was born, I was so in love with her and felt she was the most beautiful baby ever! Thanks for sharing your story. Jake is adorable!"

"Congratulations on your second baby. I love your blog and it helped us a lot as our little boy was born in July this year with cleft lip and palate and we also created a blog to release the sadness while I was pregnant. Congratulations and all the best!!!!"

"Hi James,

My name is xxxxx and my son, xxxxx, was born in March last year. He is absolutely beautiful and perfectly healthy but was born with a bilateral cleft lip and palate. I just wanted to let you know that I have been reading your blog since before xxxx was born and it has been a real help to read about how you both felt and how Jake has got on and also to read about all your other trials and tribulations, it is a real talent to be able to write like that and I wish it was a gift I had!!!! xxxx has been through three operations in his first year which have been really hard. We are delighted that for now its all over, he is still under the audiologist and may have to have grommets but for now is just being monitored.

I am really pleased to hear that Jake is doing well with his speech. I must admit to being a bit paranoid about all the sounds xxxx is making. I have two other children who spoke very early and so am trying not to measure against them, after all, xxxxx and xxxx walked very late and xxxxx is already cruising around so its all swings and roundabouts. As you say, my main fear is probably that he will get bullied. It seems particularly unfair that its the ones that go through so much as babies that are the ones that are more likely to get bullied, but maybe they won't and all the worry will have been for nothing. Fingers crossed. By the way, i was born with unilateral cleft lip (palate not affected) and was hardly ever bullied, probably only 3 times I can remember and if it hadn't been for that,it probably would have been for something else.

As we live in xxxx , we are also under the cleft nurse Ann, I did tell her that i was reading your blog months ago and I think she mentioned me to you and you subsequently mentioned it in your blog.

Anyway, just wanted to say hi and thanks for writing. I was hoping to get some picture attached of xxxx , but think all the pics are on my husbands computer. Maybe next time."

"Hi James,

Thanks for your words of encouragement on your blog. Its been just
over a week since our 20 week scan and this time last week both myself
and my husband were a bit of a mess but now I'm so much more
comfortable with what is happening. And without wanting to sound too
sucky - I think its partly due to your blog. We already have a son (2
months older than Jake) and we didn't find out the sex until birth,
this time we wanted to try something different so decided we were
going to find out at the scan. And that consumed our pre-scan
thoughts - we were so excited about finding out whether it was going
to be one of each, or 2 boys, the pros and cons of both etc etc we
completely forgot that this is actually quite an important scan where
they check that everything is actually progressing as it should be.
The lips were the last thing she checked, and I remember thinking how
hard her job must be on the odd occasion where she has to tell someone
that there is something wrong. And then she told us, and we were dumb

And for the next couple of days we hardly got off the internet trying
to find out more about this condition, and we were both really up and
down and I kept saying to xxxx (husband) that I just couldn't
understand why it upset me so much, since it is a supposedly fixable
condition. We were just completely thrown. And being the lucky 1 in
700 we felt pretty alone. I needed to hear stories of people that had
been through it all, and come through the other end OK, and while the
before/after pictures of which there are 1000s on the internet helped
a little, your blog really made me realise that while this was
important, it wasn't the be all and end all.

So now we just need to wait and hope that the cleft is not a symptom
of some other underlying issue. My obstetrician gave us some words of
encouragement this week to indicate that that was very unlikely since
everything else seemed to be OK.

Hope things are still progressing"

"Hello James

My name is xxxx and I am emailing you to say thank you.

Two days ago me and my Husband went for the 20 week scan and found out that our unborn daughter is going to have a cleft lip and possible cleft palate. I am still very much in shock and really upset. I am just feeling so numb right now. We already have a Son called xxxx who is 20 months old who has no health issues so we just blissfully assumed that this pregnancy would be fine as well. I cant stop crying and blaming myself even though I know there is nothing I could have done differently.

We live in xxxx and the xxxx Hospital's Sonographer have said they will refer us to the CLAPA team and have given us the link to the CLAPA website but I think I have just freaked myself out more by googling information. That is until I have come across your blog.

I have been reading your blog and it has made me feel a bit better. It makes me feel that maybe there is light at the end of the tunnel and that things are not as bad as they initially seem at the moment. I feel bad for being upset as I know that we are lucky compared to other people that are facing much worse problems.

Anyway sorry for rambling on, just wanted to say thanks."

Monday 4 July 2011

20 week scan

I get a fair amount of hits to this blog from expectant mums and dads who Google '20 week scan' + whatever is bothering them...unsurprising, given the name of the blog, it's longevity and subject matter. However, there's so many other terms which go on the end of the '20 week scan' prefix and it's amazing to see the types of keyword people use (I can see this stuff in Google analytics). What's more surprising is the amount of spelling mistakes but that's another story.

Anyway, the last month has delivered me hits for everything from 'piers morgan cleft lip' and 'girlfriend with a cleft lip' to 'professor haers' and 'cleft lip blog' and it dawned on me, whilst viewing a set of sterile figures on a screen, that each search is by a human with a problem, a worry or in need of help. The internet is obviously a fantastic resource yet it often proves to be a very unhuman place for those most in need. I remember when we had Jake's cleft lip and possible cleft palate diagnosed, we headed straight for Google (against the nurse's better judgement) and did our own research...I forget what search terms we'd have used but I'm sure someone else analysed the terms we used in the same clinical fashion that I do for those typed in by others. But I remember what we went through, the worry, the questions, the sadness that our experience would be different from that of others and how it totally changed our world for a time. I remember my dad always saying that all would be fine and after a while the worry and concern would be a thing of the past and of course it is, but I'd never belittle it...I'll always remember how we felt and I hope that when people find this blog, they'll see that I can 100% empathise with how they're feeling right now, before their journey starts but also that, having come out the other side, things will get easier and the memory turns into well, just a memory albeit no less significant.

As Jake hurtles towards his third birthday (which actually makes this blog three years old - and still going!), we barely notice his lip, well we can tell there's been some history there, but it's just a part of his face; similarly we don't remark about how perfect his ears are as they're just his ears...I'm not really sure what I'm saying as there's two parts, 1. objectively looking at him (and you have really do it in the mirror so you can see him from a different angle), I can't see anything wrong, he's a healthy, handsome and happy little boy with a small scar on his lip but 2. kids can be cruel and soon enough he'll have to fight his corner when the playground bully decides it's Jake's turn for some abuse. The stats on self image and kids born with clefts are pretty good and I think it's because they're in the system (in the UK at least) from day one, so they will be assessed throughout their childhood, and part of that assessment is how they seem themselves and how to deal with anyone ignorant enough to pick on them. Jake will be teased just like others will be teased and he'll be teased about stuff other than the scar on his lip in all liklihood...and as his dad I'd be just as angry and upset for him, if he were teased about his hair or anything else, it's just that I don't want anyone to be nasty to him about anything, ever for the rest of his life because I love him, not because he was born with a cleft.

Anyway, this is all a bit rambling but if you've got to the bottom of it having searched for '20 week scan...+ whatever's on your mind, you should know that whilst things seem impossible to deal with right now, as time goes by and you go through some tough situations and emotions, there is another side to it which allows you to also enjoy the present whilst knowing the future will take care of itself.

Monday 13 June 2011

£440 raised for Smile Train

As you may know, there's a charity we support called The Smile Train. As you can imagine when you first get the news that your baby will be born with a cleft you automatically log on and hit Google for all it's worth and start learning about the problem. After a few months of researching before and after photos and all about the procedure I stumbled upon the Smile Train. They are an incredible organisation started just ten years ago and made it their mission to fix clefts of babies, children and also adults who wouldn't have access to modern medical systems. No mean feat. Other worthy organisations such as Operation Smile (who by coincidence have their UK office a few doors down from where I work) do great work too by sending western doctors to these far flung places and perform as many cleft repairs as they can in two to three week periods. This is obviously fantastic, however there are so many affected people that they'd never be able to fix them all using this method even if they had all the two to three week periods forevermore.

So the Smile Train sought to do it a different way. By acknowledging that they couldn't do it all themselves, they set up a training and information platform which allowed local doctors even in the poorest and hardest to reach places to access the tools and information required so they can use their considerable skills and fix the problem themselves. What's great is that however remote, however poor the area, there will always be inspired, bright people who seek to do good and make people's lives better. The problem is that with all the best intentions in the world, even these amazing people can't do it without resources. So the Smile Train pays for everything other than providing the surgeons, nurses and doctors and as such it is incredibly efficient. Just $250 covers an operation which will transform someone's life forever.

Without this operation, these babies become kids and then adults who live crappy lives surrounded by people who believe a cleft is a curse from God and that they should be left out of regular society. They don't go to school, they don't get jobs, they don't meet a partner and they don't have children. Literally a lifetime of slavery to a birth defect which can be cured in as little as a 45 minute operation. You can see why someone wanted to sort this out. That someone was Bryan Mullaney, a guy who we were lucky to meet at the 10 year anniversary we were invited to a couple of years ago. I understand the structure of the charity has changed a little recently and he no longer runs it, however I'm sure he's just as passionate as ever and he ought to be immensely proud of what he's achieved. The stats are amazing, nearly 600,000 clefts repaired to date and now more children have clefts fixed in India and China each year than are born with them. This charity is finally resolving the problem, containing it...not many charities can claim that or even dream it.

Amazing. So we give a bit each month so once a year we can say that a baby or child can get the same benefit that Jake did for gratis on the good old NHS. We recently celebrated my folks' 40th wedding anniversary and my sister and brother-in-law's 10th at a garden party at my parents' house so we asked guests not to bring presents but told them they could make a donation to either Cancer Research or the Smile Train. I wish I'd played the guilt trip card a bit before I introduced the band but after a few vinos I forgot, however we managed to raise nearly £900, half of which will be going to the Smile Train. So that's pretty much two kids who will now have a regular life full of opportunity where before there would be none.

So thanks to everyone who donated and thanks again to the Smile Train. You rock.

Monday 11 April 2011

James Fernie

For some reason, the data centre I use to host my domains - yes the one I used to run - seems to have turned off? Why is anyone's guess but I do know they've been moving locations recently so perhaps I'll forgive them for now.

Anyway the point is, that a search for my name is slipping down the ranks somewhat. Hence this post about James Fernie which redirects to this blog. Also James Fernie used to point to my word press blog.

Anyway for now you can follow me on Twitter by clicking the following link to find:
James Fernie on Twitter

Or find me on Facebook on this link:

James Fernie on Facebook

Apologies for this blatant bit of SEO but when your name gets mixed up with a whole load of other James Fernies drastic measures are called for.

Monday 11.4.11

Today I'm supposed to be starting a new job, looking after online marketing and ecommerce conversion at Gift Library. It's kind of a dream job for me....pretty much completely on brief in terms of what I said I wanted to do when we sold the old agency. After a lifetime of sucking up to clients who were often wrong but paid the bills, it's time to go and be the client, and work on something to build some sort of legacy.

Anyway, it all happened rather fast. One interview just over a week ago, a week's notice given on my freelance contract from Stream 20 and today's the day I start. Well, not quite.

Because Clare's waters broke last night.

I believe the expression is 'OMFG'!!!!!!!!!!!

Those of you who've read this since the beginning or at least around the time Jake was born, will remember that he was two weeks early. Labour setting in after a family meal on a Sunday. Well, different family (celebrating Clare's dad's 70th) and contractions haven't started but last night around 11pm we were in bed and she gave me the news. So, just like last time, we were on the road at midnight on a Sunday - I think I wrote at the time, how weird it was to be driving at that time of day and week, and that I'd likely never do it again! Anyway, unlike last time, Clare wasn't ready. They hooked her up to the monitor and an hour later we were on our way back home. I had said that I really didn't want to come home but I was so tired I was quite pleased. Also, the initial shock and panic is now replaced with a sort of blokish attitude that we shall now simply go back to hospital and push out a baby!

We're so lucky as Clare's mum drove round to stay and look after Jake and will pick him up from nursery later and keep hold of him until our baby arrives. Because the waters have broken, they will induce Clare tomorrow morning at 8am and although we'd love for it to come today to share granddad's birthday (not to mention how cool 11.4.11 looks,esp as it matches Jake's 8.9.8), we're definitely going to have a new baby tomorrow. Which is utterly crazy. But we're ready and can't wait.

Bring it on!

Thursday 31 March 2011

Sorry been busy again!

Sorry all, it's been a while since my last confession entry...still got the whole job thing going on. A real pain working for someone else but it puts food on the table.

Clare is due in 23 days time. When you say it like that it really hits home...just after Jake has finally, at long, glorious last, settled for once and for all into the sleep pattern we've been praying for, another one is going to come along and turn things upside down again. I'm not complaining though. Much.

It's going to be wonderful and I really can't wait. I said on this blog waaaaay back in 2008, that getting married validates your relationship but having a child is what makes you a family. I know that sounds utterly obvious but you could be a family with say, a cat or whatever but maybe it's more that it rubber stamps your relationship and adds another dimension. Well, having the second I guess completes the set. Gets you to the point where if you didn't have any more kids or pets you wouldn't feel or look to the outside world at all incomplete.

Anyway, I'm looking forward to that.

Also, had a lovely message from someone of Facebook who said this blog helped her when she discovered her boy would be born with a cleft lip and palate. For what must be the hundredth time I've written this, I genuinely had no idea that people would read this and although it says in the title that it's for others, I didn't expect anyone to bother coming along to it, let alone have it help someone or give them comfort. That it did is awesome and I'm really glad it's still going, albeit sporadically.

Incidentally, the other blog at James Fernie is down for some reason, must be my sh!tty ISP - yes, the one I used to run...see what happens when the boss leaves town!

So long peeps.

Monday 17 January 2011

I'm back...

...although probably not for long. I've neglected both my blogs for a while and am acutely aware that when I started the other one (at that I said I wouldn't be one of those people who starts their blog full of ideas and enthusiasm only to see it fall into disrepair once the initial inspiration ebbs away.

After all, I was a seasoned blogger with over two years of content under my belt and felt that I could make such a statement with a hand on heart commitment. That was before a fairly drawn out process which firstly involved selling a business and secondly involved finding a new job and ultimately involved doing a new job. Turns out working for other people means you can't spend an hour or two creating literary genius as and when you feel like it. Who knew?

Anyway, with my feet, albethey freelance, now firmly under the desk, I'm happy to pick up where I left off. So where was that then...? Oh yes, Clare's up the duff.

So we've had the 20 week scan and this time there doesn't appear to be anything remotely clefty. Of course you never know about the palate until baby is born but the lip is definitely all there. We've had a 3D scan (on the free) as all the new equipment at Royal Surrey includes this mode as standard now...we got much clearer pictures this time too than when we visited the kind man with the bow tie down in Kent.

The scan itself was a nerve racking experience though. Again we had a foreign lady look after us and Clare's initial question of 'was everything o.k with my blood' got the following response:

'I'll talk about that at the end.'

I'd like to think that this lady knew about the level of anxiety we suffered last time and that it was just her foreignness that made her put her response that way. What she meant was that she couldn't give us all the information until the measurements taken during the scan had all been recorded and then, in conjunction with the other info, she could give us the prognosis. As it was, I was sat there, with hidden, crossed fingers thinking every conceivable bad thought possible. Clare had AIDS, the baby would be born a hippo, that kind of thing.

Anyway, all was o.k and the relief was palpable. I think Clare was more relaxed than me but we were both so, so relieved that it was a continued case of 'so far, so good'. It's weird but I found myself thinking that if I could bargain at this stage and take a cleft now rather than risk anything else which might go wrong, I would. That's something that the majority of parents who've sailed through a regular pregnancy will never understand. I don't mean to be flippant; of course all expectant parents go through the wringer and have a lot of concerns and worries, but until you've been through it knowing that something won't be quite right, you'll never know what the second time round feels like. In the back of my mind, I'm resigned to the fact that something still could go wrong and I'm o.k with that. Alright, perhaps not o.k with it, but I'm prepared for it and it doesn't completely freak me out. If something happens, it happens and we'll deal with it, whatever 'it' may be.

So all being well, come April-ish, Jake will have a sibling and the family will be even more complete. I'm dreading the sleep thing again but am also really excited. I'm looking forward to a different feeling on that first night. I remember bringing Jake home like it was yesterday. He and I slept in the living room while Clare caught up on some well deserved sleep upstairs. I had no idea what I was doing but the pair of got through the night o.k and the rest is history. A lot has happened since and the next installment in our story is due this year.

Can't wait!