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...
Tuesday 22 September 2009
Smile Train Dinner
Monday 21 September 2009
Just like the old days. Sort of...
Tuesday 8 September 2009
Poo Pants is 1!!!
Thursday 27 August 2009
Interview with Brian Mullaney
Tuesday 25 August 2009
Now I know
Monday 24 August 2009
Jake's first steps
Callum is 1!
Friday 21 August 2009
New dads are all the same aren't they?
Wednesday 12 August 2009
Honoured and humbled
'as a thank you for our supporters and also a chance to celebrate some of our recent achievements - Smile Pinki's Oscar, our 500,000th corrective cleft surgery, and 10 years providing children with free cleft care.'My name was suggested to Smile Train when organising the event by Martin Moodie, who I first wrote about on this post. We never did do any business with Martin but we've emailed a time or two about Jake and how he's doing, but I never thought something like this would happen. You might think this sounds over the top - it's just a charity event - but actually it's not just a charity event, it's an event for a charity that I really believe in, and that is something I never thought I'd say. I used to give a fiver a month to a charity for the blind after being door stepped 10 or so years ago. I thought it made sense as I have crappy eye sight and felt I might one day need their help. I guess I felt an affinity with the charity and in fairness, it was only a fiver. That said it was a pretty one sided relationship; money out, statement, not much else. Maybe giving a monthly donation, albeit tiny, made me feel better about myself and justify any personal shortcomings. Beyond that, nothing.
Monday 10 August 2009
Not long now
Tuesday 4 August 2009
A tribute to Walter Cronkite
The Smile Train lost a very good friend when Walter Cronkite passed away recently.
10 years ago when we started The Smile Train, Walter was one of the very first to get on board.
Many years ago I remember vividly meeting with him for the first time in his office and talking about what we were trying to do.
Always the reporter, he started quizzing me about what causes clefts, where are they most prevalent, why can’t a cure be found that would prevent them, etc. He was in his 80s at this point but he was sharp as a tack. I was kind of surprised at how interested he was in what we were doing and even more so at how much he wanted to help us.
When I explained to him how tragic it was that there were millions of children with unrepaired clefts in developing countries who were not being helped solely because they were too poor to afford surgery, he said it was a “Story that was almost too sad to tell.”
After watching videos of children with clefts that I had brought along, he shook his head and said it was “just heartbreaking.”
As I sat there speaking with him I looked around his office and saw photos, newspaper front pages and headlines of many of the biggest events that have happened in America and the world over the past 50 years. Walter was front and center at each and every one of them: JFK’s assassination, man on the moon, Vietnam, Watergate, The Berlin Wall, etc. I felt like I was in a museum and sitting across the desk from an American Institution.
When Walter agreed to appear in our very first Smile Train video, we were so honored and excited to have "the most trusted man in America" helping us. (If you want to see the video he did for us, Click Here)
And help us he did, in many ways, for more than 10 years.
Altogether, Walter Cronkite helped us provide free cleft surgery for more than 524,000 children who would otherwise never have received it.
And a few months ago when our documentary Smile Pinki won an Oscar, one of the first emails we received was from Walter congratulating us and saying how proud he was to have helped us launch The Smile Train.
He was a great man.
And we will miss him.
Brian
P.S. We have posted a special tribute to Walter on our home page, to thank him for everything he did for us. Click here to view the tribute.
Wednesday 22 July 2009
Result!
Tuesday 21 July 2009
The moment of truth
Friday 17 July 2009
Kari Callen - The next Susan Boyle?
Wednesday 15 July 2009
3 years on
Everyone gives you advice for your wedding day but the one piece of advice I'll never forget (even though I forget who gave it to us) was to step back and take it all in. It goes so fast and if you don't stop and have a look you can forget so much of it. We made several conscious efforts to stand together and just look at the crowd, take in the laughter, conversation and general merriment. I made myself take mental photographs and the one I remember most vividly was as we were walking back down the aisle. Because we were at the front, obviously, with our backs to the crowd, it wasn't until after our nuptials that we turned fully to face everyone. I remember seeing all the hats and dresses and ties and thinking what a brilliantly coloured scene it made.
Another highlight was walking into the reception to rapturous applause. Since my more exuberant youth I am not so much of a limelight seeker and Clare even less so. We worried about feeling too much of the spotlight on our wedding day. Not only did that not bother us, we were pulled towards it willingly. When you're looking your best and every single person in the room is happy to be there, happy to join in and share your day, you just can't help getting a lift from it and really taking advantage.
I even enjoyed my speech. Despite the comment about shirking the limelight I don't mind speaking in public. I used to hate it but years of presenting to clients gives you the confidence to deliver to a crowd. Plus it's a million times easier doing it to a load of friends already well into the hospitality. By the time I was toasting the best men I almost didn't want my turn to end.
The best men speech left me suitable roasted, culminating in a story which I won't go into here other than to say it involved a small French apartment, a baguette and a story I wish I'd never shared.
Most weddings see me rather the worse for wear and I'd told myself to behave, what with being so on display an all. I, for the most part, obeyed and outside the three glasses of red wine I downed prior to my speech, stayed remarkably sober all night.
Simon, our chief usher did an impromptu karaoke set with the band culminating with a brilliant rendition of Mustang Sally and even I danced all night.
I've never smiled so much in one day. In fact it was the day that I learned properly how to smile for the camera. Photos before then always showed me scowling when I thought I was smiling. When you put on a smile it feels really fake but actually looks like a smile. Crazy I know!
We were talking in bed last night about the day and how it was the best day of our lives. We felt bad that it still feels like the best day despite having been through a much bigger day in the last year. Jake's birthday was probably the most significant day, certainly the most anticipated day and easily the most emotional and important day of our lives but our wedding day will always be the best day we've spent together.
It did have a sad flipside as many of the people at the wedding were at another church the day before for the funeral of Mickey, my dad's best friend and a man who was like an uncle to me. It still makes me sad when I think about him and how someone as good as him could be taken away so young by such a horrible illness. I hope he was looking down on Clare and me that day.
R.I.P
Tuesday 7 July 2009
An interesting weekend
This is all a bit dramatic I suppose, it was only 3 days and we're both still alive but it was hard work. I think that women reading this are more likely to think 'now you know' rather than 'what's all the fuss about?'. That's because looking after a child, or rather, a baby, on your own whatever your gender is not easy for a day, let alone a weekend. Yes, Clare does it everyday but she does get some respite when I walk in and take over and then we get to spend an evening together.
I had a few plans for this weekend but for one reason or another (mainly hungover friends and yet another bout of man flu) they didn't happen, so, whilst I went out to town, the park and to show Jake his granddad's model aeroplane, I talked to remarkably few other humans. The only talking was via a series of high pitched, overly enthusiastic questions, which seem to be the only way babies get spoken to.
*high pitched*
"is that your tummy?"
"are you a clever boy?" (standard high pitched response is "yes you are, yes you are!"
"do you want some food?"
"where's your mummy?"
...repeat until insane.
I found myself most bored when indoors and wishing the weekend away and less so when I got off my arse and went out. Seems obvious but it's easier to stay in and wait for him to sleep, wake up, eat etc but time goes a lot quicker outside. So we went to the swings, played a lot, ate a lot and had a good time together.
Jake is crawling now, well army crawl, he'll be on his knees this week I predict and can pull himself up onto the furniture. I discovered this when I came back from the kitchen with a drink to see he was on his feet. Felt a bad parent, thought I'd left him in the safety of soft play items, however in the blink of an eye he was on his feet. No harm done and he'll need some knocks and bruises to toughen him up and help him learn that going face first into wooden shape sorter blocks isn't such a good move.
The crying is a pain but it gets me more frustrated when Clare's around as I know she'll be able to solve it if I can't. When you're your only option you just get on with it. That said yesterday afternoon was testing me to the limit. I had two hours to go until bedtime (when active duties were over) and he was hell-bent on screaming down the clock. He'd slept, drank milk, had his nappy changed and wasn't poorly with anything yet was screaming to the point where no noise came out of his mouth. When it's this ridiculous, the face he pulls is almost humorous but you can't sit there laughing at a screaming baby. Anyway we got through it and it was a rewarding experience. For Clare that is, she had a lovely, well deserved and overdue break.
Here's my Facebook status update from 'yesterday at 16:55' (just for you BC!)
Tuesday 30 June 2009
Clapa's new website
Here's a reminder of the difference a day makes!
Monday 29 June 2009
A big week
Then as Jake wakes up on Saturday, Clare will be leaving for the airport, not to return until Monday evening. I was anxious about this before but now I'm really looking forward to it. This weekend was a bit of a trial run and fairly straight forward. I just need to remember to take Jake's food out of the freezer for the day - most nights sees Clare lovingly preparing all manner of organic purées for the week and freezing them in ice cube trays - he has porridge and banana for breakfast, then 5 cubes of anything from 'fruity chicken' to apricot, apple and sweet potato and a fruit purée for pudding and finally another 5 cubes followed by yoghurt for tea. He finishes the whole lot off with milk and then bed. He certainly eats well and frankly, a lot considering his size. I could easily survive on less than he eats but I suppose I've done all my growing. Well I'm not getting any taller at least.
I'm going to visit some friends and will probably spend some time in the park. Jake has a ball and although he can't stand he can kick it if I suspend him from his arms and swing him at the thing. More fun for me than him I suspect but I'm determined that he'll enjoy sport so we can enjoy it together. My dad hates football and isn't into many of the traditional sports so we never did anything like that together growing up and it's only really now that I wish we'd spent time together doing sport or any sort of activity. I always bring up the story of my last football match for the school which I'd pleaded with my dad to come and watch - he promised he'd be there but never turned up - I was gutted and I know he probably feels a bit bad about it - it was pretty lame not to come along! Anyway he was very busy trying to pay school fees and build us a nice big family home and take us on holidays etc, but having a child has taught me recently that the big, expensive stuff is nowhere near as important as the small, free stuff. The detail if you like. Kicking a ball, building a camp fire, going to a football match, going fishing, trips to the cinema, all of which are affordable financially but most of which I never did because the time was never afforded. Don't get me wrong, I had a good childhood and never wanted for anything but we should have done more as a family and spent time together and although I haven't got much money, I do have time and I'm not going to waste it. I want Jake to have special memories of the things we did together instead of making me feel bad about the stuff we didn't!
We're a bit worried about the repair as there's still a bit of food escaping from Jake's nose when he eats - not all the time and much much less than before but there is some. Clare thinks the back of the palate may have broken down but we won't know until the check up next month. Just praying we don't need to go through it all again.
Wednesday 24 June 2009
Progress
Clare goes back to work next week!
I can't believe it's come round so quickly and it's going to mean a fair amount of change. I can no longer play the 'I have to work so therefore have to sleep' card at will. To start with it'll be two days a week and then from September, three, when he goes to nursery one day a week. We're very lucky to have mothers who are enthusiastic about looking after him while Clare goes back to work as we certainly couldn't afford the childcare but also that it's going to give him more variety in his life. The grandparent / grandchild relationship is pretty special and important and I'm really grateful we live close enough to make it happen.
Clare goes to Spain next weekend!
This is my first major test of fatherhood. I know this will sound crazy but having never looked after a baby for an entire night and day single handedly, I am slightly nervous. Clare is away first thing Saturday and back last thing on Monday so I have my work cut out.
I have decided to do everything as normal, I'm not going to hibernate and watch the clock tick down, but try to have a busy weekend and see people. Even without having to be in sole charge I have neglected my friends and social life of late through tiredness and lethargy so this is a good opportunity to reverse that.
I read in one of Clare's magazines, an article about a guy who said that men will never bond with their children like their wives will. Whilst I refute that, I do think it can take longer and the first year has definitely been tougher than expected. I did get the instant protective bond when Jake was born, helped by all the emotional turmoil which led up to the birth and from having seen him so much on extra the scans we had. Since then, I've felt that we've bonded well, he smiles whenever I come home from work, I can make him laugh, I play with him etc, but nothing works as well as spending lots of time together. Next weekend will be an opportunity for that. For him to see me as something other than comedian Dad but someone who can properly look after him like his mum does.
Monday 22 June 2009
The next stage
We're back home now and are settling into the routine of administering pain killers every few hours and keeping Jake as happy as possible. He won't touch his bottle, which we were warned might happen, but is eating really well. His sleep pattern has gone back to that of a new born and is up screaming several times a night. This is especially hard as we can't give him milk to placate him and he doesn't fancy a yoghurt in the dead of night.
Feeling washed out and drained today, hence the lacklustre blog, however there is a sense of relief in our house that the second of the three major operations is over, done and dusted. If we're unlucky there could be a revision operation or two but for now it's a nice feeling that he's got through and is now back on track with a 'normal' palate and development can continue.
As always all the staff at the Evelina hospital were lovely and we continue to be thankful that there are people in the world prepared to do that sort of work, well and for sod all money.
Will write more when feeling more inspired.
Wednesday 17 June 2009
The day cometh
The drill is the same as before. Arrive for a 15:00 consultation to make sure Jake is well enough for the operation and then 'at leisure' until sleep in Gassiot house opposite the hospital. Jake's been bumped up to the first operation of the day which is brilliant news as it means that he'll sleep through most of the starvation period. The downside is that I (having drawn the short straw) have to get up at 01:30 to give him his last feed. Anyway last time we had to wait around until 13:30 ish before he went down, but tomorrow he should go into theatre at more like 08:30. All being well the operation should be over by midday and the recovery can begin in earnest.
I think it's better that he has the most amount of time possible between coming round from the op and night time to give him (and Clare) a chance of a reasonable night of sleep. This time we booked Gassiot house for the second night which means that I won't have to sleep on the floor again. I know it's not about me but I'm no use to Jake after 4 hours of sleeping on a solid floor. Mind you, I'm not much better after 8 hours in a bed!
Jake will have a morphine drip up all night and this should be removed mid morning on Friday. The nurses will then take us through the routine we need to follow for the next 2-4 weeks. Firstly he'll be on a mixture of paracetamol and ibuprofen for at least 10 days and then we can slowly reduce the amounts depending on his reaction. Next he has to wear socks, secured by medical tape, on his hands. The first thing I thought about this was that he'd be uncomfortably hot but I think really the problem will be that he can't pick anything up or hold on to it. How frustrating will that be for him?! He's just learnt to coordinate his opposable thumbs and now we're taking the ability away. He's going to be very bored I think and a baby in pain plus boredom equals the square route of not much fun for any of us.
That said, this is the culmination of a long and fairly stressful year and I'm looking forward to it being over. There might well be the odd revision operation (there's another one tomorrow) and probably some speech therapy, but this should most of the hard work done and dusted.
It feels odd that after all that has gone into this blog, the point of it could almost be a thing of the past. I find it difficult to remember Jake will his cleft lip and how I felt about it. It was only 5 months ago but I'm glad of the amount of photos I took and the one on my office desk is still one with the cleft. I'm still proud of how he was born and how he looked because, albeit a bit different, that's how he started.
I'm going to carry on with the blog as I enjoy it and a few others have told me they do too. Ann mentioned that another of her sets of parents with a cleft affected child also read it. I don't know who you are, but it's good to know there's people reading it who can really empathise. So, hi to you and thanks for reading.
I think I wrote about the Clapa tea party we went to where we met a young girl who was pregnant with a baby to be born with a cleft. Well, she had a little boy and Ann says she's doing really well. She took the baby back to the next tea party and for me, that takes a lot of courage. The dad isn't about, she lives in Kingston and has no car. To get to Guildford requires a walk, a train, a bus and another walk. She's just 20 and we got the impression from the questions she was asking, that she was really worried about what people would think and how they would react. A lot of the same things we worried about but we have each other and a car. Good for her for not letting any of that crap stop her and getting on with her life looking after her beautiful baby boy.
So that's it for now. The next part of the journey starts with the 13:47 to London Waterloo.
Tuesday 16 June 2009
Ryan Air sucks
I'd urge anyone reading this blog who has a blog or website to link the words 'Ryan Air sucks' to the following url and see if we can make a difference.
Oh yeah and never fly with them again!
http://ryanairsucks.wordpress.com/ryanairsucks/
(had to use WordPress because ryanairsucks.blogspot.com had already gone. Wonder why?)
Monday 15 June 2009
Italy - the perfect holiday
Anyway, we had a brilliant time and explored the various hill top villages, got invited into the neighbouring farmer's house for dinner and discovered all about their family via our gardener / interpretor, went to the coast, cooked enormous dinners and drank a worryingly amount of Verdicchio and Chianti. Just what we needed and even more so to block out any thoughts or worries about this week's upcoming appointment.
I'll do a full update about that before we go but for now, here are some holiday pics.
Friday 5 June 2009
The ten best things about Jake
At 9 months old Jake is full of personality and is just so excited about everything. Not all the time, he winges and cries sometimes and gets tired and arsey but all babies do that. I feel like I'm arriving at a point where the good stuff is outweighing the bad; before the good stuff was compensation for the bad stuff but now the bad stuff is becoming insignificant because there's so much good stuff. I'm sure there's people who read this blog and can't understand why I write what I write about his not sleeping and the stuff I find difficult to handle. They probably think I should get over myself and realise that this is standard stuff and I shouldn't be writing a list of good things when it's all good. If nothing else, this blog has been 100% honest since the day I started it; from the feelings regarding the cleft and others' reaction to it, my annoyance at his sleeping habits, how I felt, how I wanted to feel and so on, so this is just a continuation of that. Why blog for effect, why say 'it's all gravy' of it's not?
I'm sure some people use their blogs to paint a perfect life, to further an agenda, to build an online persona, mine is just a diary of events, thoughts, feelings, hopes and a general mind dump. At first it was necessity to get it all out and whilst it's developed into much more than that, it still acts as an outlet. Up or down, I get to write things down which I may not articulate in any other way and I still find it useful for that. Also I enjoy it. English was the only subject I was ever any good at and I love language and a good sentence. I ramble too much and I know many of my sentences are too long, but I enjoy it all the same. At the time of writing this blog runs to around 38,000 words and most modern fiction novels are around 55,000 so there's clearly a lot of work and time gone into to writing it, especially given that it's fitted in around everything I have to do.
Anyway, I'll continue to be honest on here as I can't see the point in doing it any other way.
So, here are the ten best things about Jake.
1. His smile - This is number one, not just because it was the thing which we were concerned about most. More that I get the smile first thing in the morning, when I come home at lunch and before I put him to bed.
2. His laugh - Jake's always been a laugher. I equate laughter with happiness so the more he laughs the better. It's infectious too and I could listen to it all day.
3. Bedtime - Despite the yards of blog dedicated to moaning about his waking up, he does go to sleep like a very good little boy. I put him in his cot, turn on the mobile and he just stares up in wonder with a cheeky grin. He goes to bed happy which allows me to pour a glass of wine knowing he'll be asleep for the next 10 hours!
4. Bath - Jake LOVES his bath. I think most babies do but he get so exited about it and as I lift him in his legs go crazy like he's powering a cartoon car. Then he starts splashing and laughing and I get soaked. My favourite part of the day.
5. Noises - He makes some very cute noises which range from 'mamamama' to a happy shriek and they all provoke a proud dad reaction.
6. Clapping - This is the new favourite game. 'Jakey clap' and he claps. Our child is a genius. We're working on waving but he doesn't get it yet.
7. Determination - Even though I get annoyed every morning, I'm impressed how set he is on tweaking my nipple, grabbing my flesh or ripping out my armpit / chest hair. He doesn't understand 'no' yet but he will!
8. Him & Clare - The bond is awesome to see. No Dad will ever get quite the same relationship as a baby does with its mother.
9. How he makes me feel - Proud. A proper grown up. Validated.
10. Excited for the future - There's so many things I can't wait to do. Take him to play football, teach him to fish (once I've learnt), build a camp fire. It's going to be a lot of fun.
So there you have it. My boy in a list. Sorted.