Honoured and humbled

Back when I started this blog, I never imagined anything would come of it. I wasn't after anything in particular, other than getting thoughts and emotions out of my system. It was encouragement and feedback which kept me motivated to write it, but never did I think it would take me anywhere. And to be fair, it still hasn't. But it might.

This morning I received an email from one of the UK managers at the Smile Train inviting Clare and me to a dinner in October at the Berkeley, no less, being held;

'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.

When I started reading about the Smile Train, I was intrigued, obviously, but due to a combination of the coincidence with Martin, all of my research on clefts, our experiences with Jake and the proactive approach the Smile Train take (such as the letter from Brian, the tweeting etc), I found myself feeling more a part of the whole process rather than one of many important, yet essentially impotent contributors. And that's an affinity.

I keep thinking that one day I'd like to go and have a look at what they do in the places they do it and then I think I'm not that sort of person. Maybe I'm not that sort of person, or maybe I'm not that sort of person yet but might be one day! Who knows?

Anyway, I'm really looking forward to the evening to find out more (like who does the tweeting for one!) and help celebrate with them, maybe even brush shoulders with Brian and especially to say thanks to Martin.

It's on the 8th of October so I'll do a full report the day (or so) after.

Not long now

Jake can now get round the living room on his own, going from sofa to footstool to radiator to TV unit to fireplace to chair. He's quite the little mover and has also learnt to go from prone to lying on his back to sitting up. He can obviously pull himself up but the last piece to jigsaw is standing up unaided from a seated position. Once he's mastered the stand, he'll be ready to learn the art of the toddle.

Amongst his NCT friends, I believe he was first out of the blocks in terms of forward momentum but always as army crawl. Over the last few weeks some of his litttle pals have all started proper grownup crawling, using knees and palms. Naturally my competitive Dad syndrome has reemerged and therefore it is vital that he starts to walk as soon as possible! And I'm only half joking!

I reckon he's a couple of months away but he's definitely getting stronger on his feet and we can walk him one-handed now for a while before he collapses. We're off to Spain with Sarah, Hamish and baby Sadie in September and for once, I'd welcome a dollop of sod's law which means he starts to walk on his own just as we try to relax next to the pool. Holidays will all be about keeping an eye on Jake, hard surfaces and deep water from now on.

Relax? Are you kidding?!

A tribute to Walter Cronkite

I got an email from Brian Mullaney, founder of The Smile Train last week and thought I would post it here. Although most Brits will have heard the name, most don't know who he was or what he stood for in the states.

He was a journalist and broadcaster from the old school, not the modern day world of E! front men and women who just care for the latest celebrity gossip.

I think lots of people from outside the USA look down their noses at Americans as crass, overweight and loud individuals who do not realise that there is a world beyind their shores, but by all accounts Walter Cronkite was an intelligent, hardworking and thoughtful man as well as a consumate professional.

He was the classic network anchorman and broke some of the biggest stories of the 20th century. He was known as the 'most trusted man in America', a bit like our Trevor McDonald and then some.

When I was younger I wanted to be a journalist and writer and so I had come across his name and seen some of his work but I had no idea he'd done work for the Smile Train. He's gone even further up in my estimation. Here's the email.

Hi,

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.

Result!

Jake got the all clear! Perhaps I was wrong to be a pessimist after all!

Prof Haers had a good old look in Jake's mouth and is really pleased with the healing process, couldn't see any sort of abnormality or failed repair and has effectively signed us off until Spetmber 2010. We spoke about the sneezing and the food coming out of the nose but he said that as long as it was the sneeze that was propelling the food and not the lack of palate being in the way, it wasn't a problem. The fact is that he only had the operation 5 weeks ago and so things are still healing, repairing etc and therefore it is likely that his food will be irritating him a bit, hence the sneezing. It's been a while since food came out of my nose but I remember a good sneeze is what caused it.

So it seems that we're genuinely at the end of the significant part of the surgery process and the next one won't be for at least 7 years, which is very long time away.

We have to keep his teeth as clean as possible with regular (free of charge) dentist check ups which is just the same for any other kid. Also we'll be seeing more of the speech therapist starting in around 6 months time. This is another very important part of development but at least it doesn't involve a scalpel or waiting around in hospitals for days on end. Also loads of kids have speech therapy, I know of one right now who is two and hasn't spoken a word yet. He will, of course and that's what the system is there for; because we're all different and do things in our own good time.

I had Jake to myself yesterday afternoon as Clare had to work and it was good fun mucking about with him, he's becoming a real laugh. I found a spot on his shoulder blade which makes him laugh uncontrollably and exploited it to the full. He's crawling everywhere now, (although still doesn't realise how much quicker it would be on his hands and knees than dragging himself along) and I reckon he'll be walking in a couple of months. Perhaps in time for our next trip to Spain.

We're going to Spain with Sarah, Hamish and Sadie, who had her christening on Sunday and I cannot wait. It'll still be a different trip to the old holidays we had there but it's going to be nice to go a) with friends b) when the weather will be good and c) when Jake is easier to manage / transport. There'll be no sterilising, no formula, longer sleeping patterns (Sadie already sleeps until 8am) and we can all have a good laugh together.

More soon.

The moment of truth

We're off to Royal Surrey this morning to meet Piet and the team for the 6 week check up following Jake's cleft palate repair. I am convinced that some further surgery will be required but am hoping upon hope that none will be and that everything is healing nicely. Other than being what some would describe as a pessimist, but what I would describe as a realist, my reasons for thinking this are that food is still coming out of nose when he sneezes after eating and there is air escaping down through his nose.

We can't see a hole but the professor did say that Jake had a short palate when he brought the sides of it together and that he managed to lengthen it. So basically there is a bit at the back of his palate which actually wouldn't have been there if he hadn't been born with the cleft. This is the only part of the repair which is fabricated. Not fabricated in as much that anything has been added but that it has been put into a position which it has no right to be in. And therefore, perhaps this is the most likely point of failure in the whole process.

Maybe I'm worrying unduely (and I hope I am) but I like to deal in science and high percentages, I'm not reallly a gambler and err on the side of caution so, it seems to me that it's more likely than not that this is where the problem will lie, if at all.

A short palate may not mean more surgery of course, it may just need some speech therapy and coaching. In fact more surgery will only be required for developmental or social issues which a fistula (small hole) or short palate would cause. Of course, food coming out of your nose when you eat would be considered a social problem - I can't imagine the kids at his school turning a blind eye....anyway we'll see and I'll report back when we know.

On a brighter note, Jake's sleeping is getting much better. As regular readers will know, I like to moan about his sleep pattern so it's only fair to inform that he has been going through until 5.20am worse case and, like at the weekend and this morning, 7.20! That is very nearly as good as before he was born. I'm not anticipating the need for an alarm clock again just yet but it does seem that after 10.5 months of disturbed and deprived sleep we are nearly there.

Lastly, a momentus occasion last week saw Jake at a barbers having his very first haircut. Clare resisted until the last moment but when even her brother mentioned that his curls were getting out of hand, something had to give. We kept some of his mop for posterity, but here's a picture of his smart new hair cut!