Strangers and Stupid Comments

We are all born ignorant, but must work hard to remain stupid - Benjamin Franklin

I knew it was going to happen eventually at some point.

Since the day Joshua was diagnosed at the 20 week scan, the wife and I had both worried about it, talked about it, discussed what we would do when it happened. We knew it would happen... Kind of sad, but given human beings penchant for doing stupid or nasty things it was unavoidable.

This week I heard a comment by a stranger about JJs cleft. Actually I didn't hear it first hand, I heard it from my wife, who heard it from my mother in-law, who had actually heard the bloke say it. But when the wife told me, I felt like I was there and had heard it first hand.

Since I knew this situation was going to happen, and since I had mentally prepared myself for it, I had assured myself I would always remain calm in the face of other peoples stupidity.

I failed at this. I failed miserably.

Not only did I not remain calm, I went a little crazy, you see my wife told me in our living room, alone, miles away and several hours after the offence. The conversation went a little like this:

Wife: So my mum heard someone make a comment about JJ today
Me: Who? What kind of comment
Wife: Some bloke, a few hours ago in Wetherspoons, he turned to his friend and said "Did you just see that babies face, what's wrong with it?"
Me: (turning a funny shade of purple) You what? The little cock juggling prick...... His face? His FACE? My son was born that way pal, what the hell is your excuse you ugly little dickhead, you want to....
Wife: James, hes not here is he? Why are you ranting to no one?
Me: Oh yeah... I dunno.

Unfortunately I am nigh on certain that would have been my reaction if I had heard it first hand. So apart from learning I have deep rooted anger issues and enjoy shouting at thin air, I have also learnt that I'm not nearly as resolved in this department as I need to be.

You see, that comment could have just as easily have been a genuine question rather than a nasty remark. The fact is, that not many people have any experience of cleft lip or palate, and thus asking what it is, is acceptable in my view.

Asking "what is wrong with his face?" is not however. In any way, shape or form, and will clearly result in daddy bitch becoming somewhat irate.

But essentially what I am getting at, is its a very fine line between a real question and somebody saying a stupid, nasty comment.

How do you tell? And if you can tell, what in gods name do you do as a response?

Lets say for example I was there, and didn't go all "Ross Geller with his sandwich" when I heard it, because thought it was a question. Do I turn around and go and educate the person? Do I carry on walking?

No idea.

What if it was an insult? Obviously reacting the way I did in my own living room isn't going to end very well, either for myself, or the other person, so what in gods name do you do?

I don't have the answer yet.

Firstly I want to make it clear to any expectant parents of cleft babies that the above isn't the norm. We have taken Joshua out tonnes of times and the above is the first situation of this kind.

There are people that do double takes when we push him out in his pram, but, in my head at least, that is a normal human reaction, despite how annoying it is at the time.

But 99% of the people that have ever said anything about JJ have been lovely, nice, kind comments. So don't worry.

But throughout mankind's history people have proven themselves to be somewhat stupid, and therefore we need to accept that it is highly likely someone will say something stupid at some point. How we react is up to us, but I genuinely don't have the answer to what that is.

This blog is placed on several cleft forums and thus there are a lot of people out there with more experience than I have. So I would like you to comment below if you have time, and let me know what your feelings on the matter are, and how you might deal/ have dealt with a similar situation before?

In terms of a Joshua update, all I am going to say is that the wife managed to get a smile picture, which made my week. Because its the most stunning smile I have ever seen and needs to be shared with the world!

JJ, Looking awesome.

Thankful for Things (Heart Assessment)

You know, all that really matters is that the people you love are happy and healthy. Everything else is just sprinkles on the sundae. - Paul Walker

So Friday was the day that Joshua had his heart scan. Just in case you missed the post that detailed it, JJ was diagnosed with a heart murmur at his general check up and we needed a heart scan to determine what was causing it.

In regards to his lip assessment, I had spoken to a lot of people at work, my family, and my friends about it. Tried to get their take on it. You know, gauge their reaction, take stock of the situation, use people as a soundboard for my own feelings. Take their positive messages and feel better about the upcoming scan.

In regards to the heart scan, I told people it was happening and then didn't bring it up again. I buried it deep inside and tried to even forget it was happening. This scared me. It wasn't something cosmetic, it was potentially something that could impact Joshua's health and well-being in a serious and scary way.

I'm not a godly man. In fact I don't really believe there is one. 

But there I was, in the days before the scan, in my head praying to a god i didn't believe in. That's right. There I was, at night, in-my-head-requesting to a deity i have never asked before, to help me and mine out. Maybe deep down I do believe in a higher power, or maybe I'm just a hypocrite.

I have experiences of scans. At the 20 pregnancy week scan the nurse had flown by all the checks of head, heart, lungs, brain etc. whilst talking to us throughout. Until, that is she did the scan on his face.

At the point of scanning his face, her smile disappeared and she went quiet. I looked around the room at my wife, mother and mother-in-law and all three had the same look of worry as i did. The nurse then turned round and told us she thought he had a cleft and was going to get a consultant to have a look. 

I knew the signs to look for.

At the heart scan, we were called into the scanning room and the nurse applied the same device to Joshua as they did to my wife at the 20 week scan. It immediately found the heart and I found myself momentarily mesmerized at the sight of it beating away.

There was no smile. The nurse didn't speak. Neither did me or my wife.

Both of us wanted to ask the question "is it ok"? I know I did, and Im positive my wife did, but the nurses reaction made us both think we were not going to like the answer.

So we waited for, I would guess about 5 minutes, it felt like an hour. I think it was at the point that both my wife and I had leaned so far forward that our noses were almost touching the display (you know because we needed to see clearly before, we, ourselves made a diagnosis?) that the nurse noticed our distress and said "oh im sorry, you look worried, there doesn't seem to be anything wrong at all. Perfectly healthy".

I could have simultaneously kissed her and headbutted her in the face.

Turns out Joshuas heart has a tiny, teeny, itty bitty hole about 1mm in size. The majority of babies do and it closes on its own. The boy is, and will be fine. Hand on heart the best news i have ever, ever heard.

So thats all there is on that. We now wait until we get a letter for JJs first operation, it should be earlier than Xmas now that he has been given the all clear.

In terms of Joshua himself, his lordship and the future leader of the world has learned how to whinge. Not cry. Whinge.

I am absolutely positive that he has noticed that when he makes his "WAHHHHH" happen, that daddy bitch and mummy slave come running with cuddles and/or food. I'm absolutely convinced he has figured this out.

Being a clever little baby he now uses his "WAHHHH" at opportune times. Like, lets say, if you stop bouncing him for more than one second, or if you take the bottle out of his mouth for two seconds to clean his chin, or if you......actually he just uses it a lot.

Im sure all babies do this. And this, ladies and gents, is what separates the men from the ladies. I have the resolve to deal with a screaming baby for what seems like days. In reality the male of the species kids itself that this is the case, but in all actuality is counting the time in which he passes screaming baby to his partner.

Being a bloke I can also report that you believe you get less sleep than your partner, because you know, you are the man, and you work and stuff, and you have the inability to sleep at said workplace. Whilst the wife wiles away her maternity leave playing with baby, and sleeping when he does.

It was a bank holiday this weekend in the UK. Joshua "whinged" for the majority and thus I slept less than a pro-plus junkie on an all nighter. I pined for the working week to start.

All of this is a learning process. I learned the wife does a lot more than me. And tonnes more than I realised. I just write about it.

So I'm really thankful. Both to higher power I don't believe in, and the one I'm married to.

The wife and the boy....looking awesome

Laughter and Little Moments

"The first time your laughter unfurled its wings in the wind, we knew that the world would never be the same" - Brian Andreas. 

This Brian chap knew what he was talking about when he said that.

I heard JJ let out a little giggle for the first time this week. Its a feeling I cant describe. A laugh like I have never made came out of my mouth in return, whilst I looked around frantically for my wife (Who was making a shopping list at the time) to see if she heard. She didn't unfortunately. Damn Asda to hell!  

I sat there and tried to make him giggle again, but trouble was I don't even know what it was that made him giggle in the first place, so after 10 minutes JJ got bored of daddy pulling funny faces and stealing his nose and began to cry. 10 minutes is a long time in a babies world I am learning.

But that was it, one little moment. One little moment of a constant barrage of little moments that happen on a daily basis. Whether it is the boy holding himself up on his arms for a few seconds as I lie him down, or swiping his hand on the bottle to move it out of his mouth, the sound he makes when he is really hungry and latches onto a bottle (he reminds me of Gizmo from the Gremlins fame), Joshua voluntarily latching his hand onto my fingers, his vague attempts at making crawling motions, or my personal favorite, when he started sucking my nose. Little moments are everywhere.

All parents get the joys of these little moments, whether they notice them or not is up to them. It would be all too easy to ignore these "firsts" and concentrate on the obvious worries and complications that come with a baby with a cleft. Since the day he was diagnosed at 20 weeks old, I promised myself that I would try to never do that. I'm a positive person, I always try to see a glass half full (Its not my round then). I assured myself that this would be no different. I have stayed true to my word so far. This whole experience is too valuable to miss one single part.

As a parent of a child with a cleft it is far too easy to get caught up in the worry of operations, assessments, choking episodes, reflux and feeding complications. When actually, my thought on the matter is that it "is only a cleft".

Its not that bad, I genuinely don't think it is. And for most of us, we need to be thankful that we live in a country in which the medical facilities are such, that we can, and should, have that attitude as some are not so fortunate.

I'm not saying that we shouldn't get angry about the very rare double takes of strangers, worry about operations, about their future speech, about the prospects of the way other children might be cruel, we are parents, its our job. Im also not saying that we should just dismiss our childrens ailments as "nothing", they are of course deeply impactful on their own lives and ours.

I'm just saying that JJ is a child that has a cleft, but everything about him isn't just the cleft. I want him to grow up knowing that. I want him to be confident and happy in his own skin, and he wont do that if me and the wife treat him like he is different to any other little boy. 

I want him to smile and laugh and enjoy his own lifes little moments and I'm determined to make that happen. Cleft or no cleft.

There will be days where I feel anxious, and days where I wonder "Why JJ"? Days where I think its unfair, and days where I wish he could sleep a full 3 hours without being woken by reflux caused by his palate. Thats cool, I can deal with that. Im a dad now, worry and stress comes with the territory, cleft baby or no.

But having a child is the best thing that has ever happened to me in my life, it is without a doubt the single best feeling ever. I don't want to lose sight of that.

So I enjoy the little moments and JJ suggests everyone else does too.

First Cleft Assessment

Tuesday of this week was his Lordships first assessment of the cleft variety. I had remained relatively calm over the weekend and Monday, but by Tuesday morning I was a bag of nerves.

My one big worry was that JJs upcoming heart scan (22nd August - I remembered whoo hoo!) would put the mockers on the whole ball game, and play would be postponed for quite a while. So up at the crack of birdshit me and the wife got, ready to make our way to St Guys and Thomas' hospital for our 9am appointment.

We went by cab, with a really cheerful cabbie (read miserable bastard) and JJ slept for the whole way, except for a slight moment, when he fulfilled his current fave hobby of eating. This was quite a result. Things were looking good.

When we entered the room, there were 5 people there. The cleft surgeon who will operate on Josh, his future speech therapist, his cleft nurse, a registrar and some 12 year old bird on work experience......well she looked about 12, I'm sure she wasn't. All of these people (except work experience girl) will be his cleft team, hopefully for the majority of Joshuas life up until he is 18, but at the very least its the team for the foreseeable future.

Its upon walking into a room of all these professionals that I got the first proper realisation of how big this job is. Its a long term plan, with long term goals and nothing is going to be done overnight. It feels quite daunting to think of it that way.

So what was the consensus? Well, the cleft surgeon had to wake Josh up and have a ferret around his mouth, which it has to be said, Josh was more than upset about. It appears he doesn't like people poking about in his gob, who'd have thought it?

But other than that, the resulting conversation was fairly good. Joshua actually has a bi-lateral cleft of the lip, which just means a cleft on both sides. Previously we were told it was unilateral.

He has the incomplete cleft of the right hand side, and what is called a microform cleft of the left hand side. You have surely noticed the cleft of the right, but probably missed the microform, it basically looks like a scar (as for all intents and purposes that's exactly what it is). In the pic below you can see it clearly.

He also has a cleft of the gum on the right hand side only, although this is slight. As we suspected he also has a full cleft of the soft palate, with a very small, teeny, tiny cleft of the hard palate adjoining the soft. So the back of the roof of his mouth is essentially open in two parts.

You know that dangly bit at the back of your throat? Well that, my friends is called your Uvula, Google says so. Josh has two of them, (Well, one in two halves), one on the right hand side, and one on the left. Cool as penguin piss it is!

As previously mentioned JJ hates mouth ferreting, so below is the best pic I could get, when he was yawning!

The surgeon expects Josh to have surgery to fix the right hand side incomplete cleft before Xmas at the very latest. He expects this to be fairly straightforward, and he is confident of a good result. He wants to leave the microform alone for the time being, as there is no point in swapping a scar for a scar, but may want to do do some revision on it in the future if it gets any bigger as JJs face grows.

He was also confident that the gum notch is that slight, that JJ has fairly good chance of his teeth being minimally affected, but will look closer when he does the lip repair.

The palate repair will happen about 3 months after the lip repair. There is a 50/50 chance that after the operation Joshua will need speech therapy to help him pronounce B's G's D's T's etc, and after that a further 25% chance that he will need further palate operation to help with his speech further.

That was it. That's all we know up until the heart scan on the 22nd, after which, dependent upon the diagnosis we will get an early or later date for the op.

So how do I feel about it all? Well as far as clefts go, Joshua has an unusual combination, but the fact is, he actually has very mild clefts and thus the operations to fix them have a higher probability of garnering better results. So I'm quite upbeat about the whole thing, as is the wife. Lets just see what Friday brings and then we should have a much clearer picture of the situation.

My latest fave photo of the little dude. I will try to do a blog mid week, as the one on Friday will obviously be about the heart scan, so will try for a more fatherly one before then - I think the medical ones, ironically, make for harder reading!

The Blog

This blog has been somewhat of a success really. It has had nearly 800 unique page views since I started 6 weeks ago, much more than I suspected. Viewers from America and UK mainly, but some from Australia, France and Germany too. I have actually received a personal message from another dad who wanted to thank me for writing it as its helping him prepare for the birth of his cleft baby, which really meant a lot.

To help me out, if you enjoy the blog, I would just ask that you give it a little "like" on Facebook below, or +1 for Google+. If you feel like leaving any comments, if you could make them below. It all helps with the Google rankings, and if this blog could be of use to a few more parents, even a little bit, that would be awesome.

Thanks for reading.

Doctors and Dates

One of the things I have never been any good at is remembering dates. My wife, mother and sisters will back me up on this with some vigor. "dates" they will say. "James is crap at remembering them" they will utter.

My mother would sit you down and recite you with the exact birthdays in which I have forgotten to send a card, whilst my wife would happily let you know the amount of times I need reminding about her own birthday, our anniversary or even Joshua's neo-natal check ups.

But the date of the 12th August is somewhat etched into my mind. That is the date that your future king will be going in for his lip assessment. I remember this partially because of what it is. Essentially it is where the doctors are going to measure him up, check out his clefts and look at the available options. How they are going to do the repair and when, on both his lip and palate.

But more because it's the first big milestone on his cleft journey. Its both exciting and terrifying at the same time. I have no idea what to expect, what types of complications may arise, what indeed the doctors may tell us. I do know its the first step towards surgery, which is the bit that scares me the most.

The little guy is so tiny and in 2 - 3 months hes going to be operated on. Its not a thought I like to dwell on too much. If you fancied you could take a look at any of the available cleft forums on the web, in pretty much any one you care to read you will see posts from parents posting about how they are scared for the upcoming operation, and, after the operation, how much they miss their childs "wide smile".

Being that I knew my son was going to be born with a cleft, I had already frequented many of these forums. I wondered how these people could worry so much and miss the cleft. I mean these are trained doctors and the operation carries very little risk. The cleft itself needs to go, for the child's sake right?

But now Joshua is here I understand in full. Little risk is too much risk, and its heartbreaking to think of little JJ in pain after the op.

In regards to missing the cleft lip when it's gone, I have already stated in a previous post how he looks like he was born to sport it. He has just started to smile, smiles that are not caused by wind that is (I try so hard to get a pic, but he enjoys changing his expression before I get one), and his smile looks stunning, why in gods name would you want to change something so perfect?

You kind of feel like things are all planned out and set in concrete, with no way of you altering or adapting its course. And then, if you could stop it, would you want to?

The answer to that last question is a resounding no. Of course Joshua needs to have the operation, society is such that he needs a "normal" looking lip (whatever the hell that is), sad, but true. He certainly needs the operation on his palate which would otherwise dramatically effect his speech. Doesn't mean I need to embrace the fact that he needs to go through it though.

Doctors are becoming a steadfast part of our life to be honest. The other day JJ went for one of his Neonatal check ups. In that check up the doctor identified a heart murmur, could be nothing, could be something, we don't know yet. In itself it needs a scan and the result of which could affect the date of his cleft operations.

I mean they wont operate on a child that has so much as a cold, so if it turns out Joshua has something wrong with his ticker, I'm fairly certain the op is getting pushed back until that is fixed. Am I worried about that, or that their might be something wrong with his heart? I don't know, it all seems to be the same big ball of worry.

To be honest, its a lot of not knowing. And I hate not knowing. I've forgotten the date that the heart scan is on too....August 20 something. Rubbish so I am!

Medical update aside, the boy is doing fantastic. He is strong as a very small ox...An Oxlett lets say. The little differences and changes I see each day are amazing. He can hold his head up for the majority of the time and is sturdy. He cant crawl yet of course, but he has the movements down. If you put him on his belly he looks like he is a really small dehydrated bald man, scrabbling around in the desert to get water. Ha!

Hes also lovely and chubby. In fact i have nicknamed him "fatman", you know, like "dinna, dinna, dinna, dinna, dinna FAT MAN!!" to the bat man tune. The wife goes nuts, apparently saying that is going to cause him to get Anorexia Nervosa or some bollocks, so we cant call him that. Shame, he seemed to like it.

On the subject of my wife, I need to make an editorial correction. Apparently in my last post, I made it appear that it was me that got up for every night feed. Obviously not the case.

For the sake of my marriage, I have been asked to let you all know that I only ever do some of the weekend night feeds, and very, very rarely one or two of the week night feeds. The wife deserves some recognition for the rest.........I have never heard of a child that has been taught to feed itself by 7 weeks, so she deserves some credit.

Oooooh Im in so much trouble!

Here's the boy looking awesome:

Nappies and late nights

At the time of writing JJ is one day away from 6 weeks old. Month and a half. Its nuts I tell you. The boy feels like he has been here 5 minutes but yet part of my life forever.

Prior to him being born I thought I had fatherhood down. Images of happy smiling boy, with me bumping him up and down on my knee flashed through my mind. In my head, the boy never cried and his nappy's were changed by some invisible force, not seen to my imaginary situations eyes.

Real life however has hit me in the head like some sort of freight train. Turns out babies are life's real Chuck Norris' - they don't care what time it is, what mood you are in, if you have done a 15 hour day. They are going to let you know they are hungry and no amount of bouncing-on-knee is going to achieve a single god damn thing, except make baby chuck up. And what are you going to do about it?

Nothing. Nothing is what you do about it. Your normal reaction to a human being screaming in your lug hole at 4am, whilst another human being (say my wife) is barking instructions in your other listening hole, is to tell the screaming human to be quiet.

Except that isn't possible, because little human has no way of conversing with you other than crying. This is JJs only way of letting you know hes less than happy. Besides he is far too cute to shout at....my wife likes to shout at me instead. Thats cool. Because all JJ is trying to say is:

"I am hungry!" WAHHHHHHHHH.
"I don't like the way you are holding me" WAAAAHHHHHHHH
"That face you just pulled isn't nearly funny enough" WAAAAAAHHHHHH!!!!!!!!
"I just shit my pants whilst sneezing and now I have snot over my front, and shit at the back, how in gods name are you going to pick me up to clean me?" WAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

Thankfully for me and the wife, JJ decides to only really cry and kick off at about 11pm - 6am. So by time he is in mid flow, we are so tired it seems like a bad dream.

That's cool though, I can handle that. He's a baby. Babies cry.

Babies also crap themselves a lot though.

I'm not going to exaggerate here, I'm the general at whipping off a damp nappy. I can get that boys nappy off, body wiped, talcum powder liberally applied and new nappy on faster than Jordan finds a new husband.

When he craps himself however......I just struggle with it. The wife can do it so fast it's like one of them magicians whipping off a table cloth. You know, done real quick and once its done everything is where it should be.

I do it, take my time, be careful and the boy ends up with shit on his forehead and elbows.

It just doesn't make sense.

My wife also seems to have a natural selection kind of genetic immunity to the smell of the boys poop. Honestly I love him, hes of my blood and my son and heir, I would put my life before his in a heart beat and do what needed to be done to provide for him.

But by god his shit stinks.

Its like some sort smelly mustard gas bomb. Gets on your throat, stings your eyes and makes you want to gag. The wife hums a tune, smiling throughout it all, like he craps flowers or something, god knows how.

The above is what I feel like writing about, as it's what shocked me most. My inability to mentally prepare for what is so obvious, yet never enters a mans brain.

I already knew that his first smile (Happened last week, but saw my first this week) would fill me with an awe I've never felt. I already knew that realizing he recognized my face once I came back from work would be awesome. I knew, hand on heart, that the boy would be the single best thing I have ever experienced in my life.

I just didn't realise his crap would stink so bad and that he would make me quite so sleepy. Thing is, the first 18 Paragraphs of this post pale into insignificance to the final.

Below is a pic of me and the boy napping, which was caught by my little sister. How can you not love the very bones of that little boy? No, I don't know either.