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.
A blog about our son Jake, born in 2008 with a cleft lip and palate. I started it the day after the cleft was diagnosed and continue to write for people who turn up here every day after getting the same news. A cleft lip and palate is not the end of the world. Start at the first post and then read on...
Friday 23 September 2011
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.
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 Dailycrap 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.
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
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.
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