Comradeship or lonely furrow

It is amazing, sitting in a ward where everyone has there own problems, that people are sharing their stories. It is like the collective strength is greater than the some of its parts. In reality, no one has enough energy to actually help others beyond some very superficial aid.

Of course, the mums are better than the dads at this. Mums share better, they are permitted to show weakness and will receive support. Dads just focus on their child and not showing any weakness...

I have had an epiphany, the mums way has some benefit. Now don't get me wrong, I have not been gossiping and swapping tales in the parents room. After all I don't need to. I am the one that comes with E and Es  mum - everyone knows them on the ward! (E could make friends in a phone box). I have had a couple of brief conversations, but I have looked elsewhere for my release.

If you look back at my blog you will see some sporadic posting with large gaps... But I have kept to my promise of daily posts here. Don't for one minute think that was a promise to anyone other than myself. This is my release, my aide memoire. This is me telling no one in particular my thoughts, feelings and fears. This is my parents room - with no faces.

I think you need that too. If you try to plough on alone, you will get stuck. Perhaps the mums have the best idea - it just isn't really me but I found my way. I have noticed that there is no jealousy. There are some little ones who are better or worse, who have more or less serious cardiac problems. No one begrudges you if your one recovers sooner. I do worry what people think, when E wanders around saying hiya and demanding cuddles. Do you know though, they all seem genuinely pleased, of course they wish it was them, but they are pleased!

The true nature of the vent of this blog came home last night. While writing it, I fell asleep in the pull down bed. So I didn't quite make a post every day but I'm sure you can forgive me that.

E has woken up fighting - you got your blood pressure over night - NO MORE!

Angels

The first night in the cardiac ward was pretty good. E let the nurses know they weren't getting anything for free. I got some sleep - but I'm not craving noise like I was yesterday! So as I sit with E in the early morning light, looking out over Lambeth palace gardens I have decided to write a post that will no doubt bring a tear to my eye. You have been warned.

E's Nan made a request that she had Angels by Robbie Williams played at her funeral. I'm not a fan, but there was no question we would play it for her. Now that song holds a very emotional response for me. But for some reason the song spun round my head yesterday as I was able to relax a little about E.  Here's a little bit about what came with it, which may not fit with your beliefs.

There are a lot of people who made E's family what it is, who he never met. They never got the joy of his smile or the cuddles. But I think they may be some of the most important people in E's life.

I envisage a group of guardian angels just for E. If I'm honest, I think he needs them. I see them organised by F (a brilliant family man who I only knew for a short time but whose spirit lives on in my boys adoration of their cousins). A would offer some muscle and make sure no one took themselves too seriously. There are too many to mention here.

Special mention though goes to my Mum, E's nan. I have always told my boys about nanny Y, and that she is an angel. I tell them she would have loved them very much and know she would enjoy the challenge of another generation of boys!

So what is her role in this army of angels. In my head she's right there with E when I can't be. In my head she hold his hand and strokes his head when I can't be with him. She keeps him safe when he most needs it. A wonderful carer to all her boys when she was with us I find comfort in the idea of her giving him peace in his hardest times.

On a happier note, E's favourite nurse is back and he's started to make friends with her a little bit (he stole her calculator!). More importantly, E's mum is close and promises coffee!

A day of mixed feelings

A day which started with needing noise, so I thought about my daily post whilst walking down the deserted corridors with the iPod up loud! (My choice for the day, Ash: walking barefoot). I thought a lot about the care E has had but wanted to focus on ICU. A place you will see if your child has heart surgery.

ICU is the place you want to be cared for in. The nursing staff are one to one with patients, often handpicked for specialism's which a given patient may need. The doctors are the very best and work as an amazing team where egos do not last (special mention to Andrew who gave me so much confidence in every element of E's care). No questions is unanswered or unaskable. Parents are part of the team (because you know your child). E had a bed space which could infuse him with 11 different products, help him breath, monitor his vital stats, and charge my phone, at the same time!

However, ICU is only for the most in need, you need to accept that, and be thankful that you had it... I have heard a lot of moaning from people about the team "not knowing what the problem is" etc. Paediatric ICU. They are with patients who cannot communicate and are trying to navigate by numbers and feel. I think they're awesome!

E had some very erratic blood pressure issues in ICU. The team were trying to find a solution. It was the 4th on the list they tried that worked (blood transfusion). They would not give up and were not letting him go without gaining some control.  He was in need, he was in danger and the checked everything.

BUT, the days in ICU are always numbered. To go home you need to get onto the ward. To get you on to the ward is the aim of the whole team who work there. Not to the detriment of one child over another, towards the ultimate goal.

So it is with gladness and sadness that I can announce E is on the road to recovery. He has left ICU and is with his favourite nurse (also E) on the high dependency bay on the cardiac ward.

To the ICU team at Evelina London - my son is alive today because of your caring and diligent work. He is on the ward today because you managed the problem until you found the solution.

On another note E has made his mum and I evaluate an area in our life summed up by an adaptation of a phrase: "receive and ye shall give" ( perhaps the wrong attitude but better late than never). In a return for me and a first for E's mum, we are going to give blood. Who knows where would be if someone else hadn't...

The unfamiliar side of the familiar and our medical miracle

As a journey into the unknown, the last 24hrs have been strangely familiar to me. Pre op prep, the never ending wait, the moment you're told he's out, the mass of wires and machines, the desperately caring nursing staff, the doctors who get that you want them to translate what they just said.

Last night was slightly unfamiliar also. Last time E had heart surgery he woke up with a bang, extubated himself and removed a couple of lines in and was sat up watching Fireman Sam by breakfast. This time was different: they obviously had a struggle before we got to see him; the balance was only found by morning; he still had the breathing tube in they were still trying to sort excessive draining. He's not sat up for breakfast, he still looks like an extra in a hospital drama (non speaking part). Deep down, E is there, he has enough drugs to down a large horse and he's still trying to wave people away - with heavily splinted arms to stop him playing doctor!).

To put this in perspective, a small tale of last time. When he woke with a bang, I thought I was watching the end and just grabbed his hands as medical professionals rushed around him. My body went in to shut down and I was trying to get on to a seat - but I would not let go despite the medical professionals trying to release my grip. I wanted E to know I was there. Inevitably the blood oxygen balance tipped and I went down (mock me if you wish, I still came back for round 2). My first thought when i came round was to get on my knees to be back with E. This s time I readied myself and it was a calmer experience, despite, or perhaps because of, E being in worse shape...

So medical miracle? It may be over stating, but I don't think so. His surgeon has never seen what was in E's aorta - no one has - they have sent it to the lab. They all seem to agree that E was quite lucky to make it to surgery. They seem very surprised that he showed no symptoms - but he was bouncing away on the trampoline last weekend. As an aside, all of this made me realise I was part of a new community - on hearing that the surgeon would be reviewing all of his WS patients to write up what had been found, I said that I thought any findings would be very welcome by the WS community. You see, it is all about our little medical miracle, but everything they find out might help M, C, L, A and all of the others at any age!

So in my head he is tough, resilient and not just a bit of a miracle. At an average of 1 open heart surgery per year of his life so far, he's a miracle who needs a stern talking to but we'll get to that later.

To any WS parents out there, keep every echo appointment - E may not have made the next one.

As a postscript to yesterday, where I hope I credited our support network, we received word today that a lovely friend of ours will be taking part in an obstacle course race called Tough Mudder next week. She is doing this in aid of the Williams Syndrome Foundation. Why? Because of one man, E. So it is true that the ladies can't resist a scar. Please support if you can - it may fund the next cardiac research coming out of some unusual findings in surgery... Who knows?

www.justgiving.com/emma-sinden1

We are waiting, we are waiting...

Mostly in to theatre nearly 3 hours ago. We do not expect to see him inside another 4. We wait...

The greatest fear I have is that the last thing E will know is me restraining him, while the mask is applied for the gas. My greatest hope is that he remembers the last words said to him while awake. "I love you" from his mum and "keep fighting bubba" from me.

I can't dwell on that today as it's a bit rbed a bit of the the moment.

So the business for today is something I have read a few things about recently. The reaction to the news that you have a child with special needs or needing major surgery. "I don't know how you cope". This came to mind when a new colleague was asking about E and repeatedly told me how they didn't understand how I could be so solid about it. They didn't understand how I could be so strong and how I could carry on. I will now discuss my take on this.

Firstly, I do not consider myself strong - I would like nothing more than to curl up in a ball and wait for someone to tell me its over. E deserves more than that. He's the strong one. He is the only one who really carries on like nothing is happening. He will need help, not want it, and that help comes from me and his Mum.

Secondly, our "strength" if that is what it is, does not just exist. It relies on support and foundation. The way we were raised, the family who are there when we need to vent, take a break, or just remind ourselves who we are. Our friends who have never faltered and in my case have needed to give me the kick I needed to bring my family through its trials.

Most recently, the support of complete strangers who have never met E, or us. The wonder of social media has seen E prayed for and sent positive vibes from around the world. I cannot explain how good that makes us feel, that it's not just us on E's side.

Oddly, today I spare a thought for the other people in E's life. His nanny L who claims she has the best boss in the world because of the greeting she gets each morning. His worried grandparents whose feelings I cannot fathom (that's a generation they should never worry about seeing like this!). His aunts and uncles and cousins, separated by hundreds and thousands of miles. Mostly though his brother C. Himself a little boy, who tears up at the mention he won't see E because he needs an operation. Who has a droopy bottom lop when he tells you he will miss E.

This brings me back round to the functioning thing. There is no choice. E and C are our reason to get up on the most difficult mornings - this morning for example, E decided to talk to us through his monitor from 4.30 and C woke at 6 and came for a cuddle in bed - quite literally our reason to get up. Functioning is a difficult thing at times, but I guess we are.

Well that wasted a half hour! I imagine the next post will come when we have E back and I've caught an opportunity to grab the phone.

"Never tell me the odds"

This post is going to be a departure from the norm for this as I feel I want to document the next few days. So I will be posting at least daily from today until E leaves hospital.

On that note, the decision is that E will have open heart surgery, for the second time in 6 months, tomorrow.  Since we were told that, a week ago, I feel like I have just about stumbled through what absolutely had to happen.  A variety of appointments, seeing surgeon etc etc.

So we reset the clock, we get C packed off with gaga (not lady) for the weekend and nanny looking after him before and after school.

I thought I'd try and blog this for a few reasons, firstly that I want to be able to look back at this. I can now say the memory fades. I forgot how bad the knot in the stomach is. I forgot how endless the waiting feels. I forgot how much I ache to be allowed to lay on the table myself. However, I do remember asking for advice of what to expect and what the days in hospital are like. So, I will hopefully help a few people one day through detailing this experience. Odd that the next few days do not feel like a journey into the unknown, rather a familiar and unwelcome path...

So, to the title. E's surgeon, as he must, explained to me the risks in detailed percentage terms. Risk of death, risk of brain injury etc etc. I resisted the urge to quote Han Solo, "never tell me the odds!". So it is with this, that this dad is off to navigate this particular asteroid field.

In the long wait tomorrow I'll check in about progress and the inevitable " I don't know how you're even functioning".

Ready to roll the dice one more time!

Tubthumping

Right, once again, a long break. This time,we we dealing with the small matter of open heart surgery for little E. He had a repair of his supravalvular aortic stenosis done in March. Cannot fault the team, our support network, C or indeed E. C was a brave big brother who shed some tears but did everything that was asked. He even accepted that he couldn't give big squeezes so substituted a toy and cuddled E's foot for a month... E himself was discharged 4 days after surgery! ⁴ days after open heart surgery.

The last few months have been tough and exhausting, but E was back up and at em fully for our summer holiday to France. . When we came back, we went to his regular cardiac clinic fully of positive thoughts - he had been fixed! However, what we were told knocked us back. Scar tissue was causing a problem and . A big problem! So climbing back on the merry go round, we waited for MRI appointment and that confirmed the need for something to happen...

So now we wait - not for long - this time its urgent. Not sure what it is yet either astthey will try to balloon the area but if it doesn't work they will go open again. So, blind to what to prepare for awaiting the call to let us know when..

So why the title? The title is back to my music theme. A song by Chumbawumba from the 90s. The important lyric here is "I get knocked down, but I get up again".  We can't falter, E deserves better. We can't stop, C and E need more than that. We have been knocked down and we're getting up and dusting down and moving forward. That might hit some more bumps but there is no option.

That Ironman seems easy now...

So now we wait, not long - this time its urgent - and not sure what for. They will try to balloon the scar tissue,

Episode 6: Return of the William's Syndrome Dad

WOW! That time I really did take a long break. But, I'm back and hopefully will get back in to it. I've missed it if I'm honest, so I guess the experiment has some very non-scientific results.

Moving house, the London Olympics, E's mum being made redundant and getting a new job, E's mum starting new job, finding new nanny and finally Christmas have really wiped out the back end of 2012.

To ease myself back in, I thought I'd give that long awaited update on E.

E is a lovely little boy. He loves cuddles, but only on his terms, and one of his favourite things (excluding peppa pig) is bouncing on my tummy. He has gone mobile, crawling after his brother, and racing to the front door to greet new people. He can stand with support and cruise around the furniture, but shows no desire to walk just yet. He refuses to learn to sign but insists that you ask closed questions. In response "yeah" means yes and silence or a hand in the face means no.

We get masses of compliments about E, how cute and happy he is. These people are right, but somehow I find the compliments hard to take. I know this is because he has Williams, and I know they don't understand. No idea if it is my guilt at not telling them or just my fears of the long term issues that come with the cuteness...

Anyway, health wise, E has been doing OK with the odd interruption for coughs and colds, but no major Williams related issues. Well, that was right until December, when we had a cardio clinic. E has now been scanned and measured and poked and prodded (including MRI of his heart). The upshot is that he is likely to need surgery on his aorta. E has supra-valvular aortic stenosis (best described as a pinch point just above the valve).

This has come as a big smack in the face. One which I am not sure we were really expecting. Oh well, we find out the recommendation of the panel this week and until then E is getting extra cuddles and we are all celebrating Cs birthday!

Be back soon...

"Happy" Anniversary

When I wrote my post, a little under a year ago, entitled W-day 8th July, I really didn't know what the year would hold - well I now have a pretty good idea, having lived almost every last minute of that year.  I guess I have actually been the Dad of a child with Williams Syndrome for nearly 15 months - but I didn't know it until 8th July 2011.  So what has the last year brought:

Well, fate brought about a big gap between this and the last post - actually it was BT, not fate. I have had no broadband and a load of jobs to do - we moved house.  We moved house in order to provide a long term home for E.  In theory we will not need to leave this house unless we become too old to get around it...  I would definitely not be sitting right here had it not been for the Williams Syndrome (although E's Mum had a little to do with it too).

E has lit up our lives, it's not easy to explain.  However, you would think that with the appointments, the overnight stays in hospital, the fighting to get access to therapies, the constant repetition of the basic tale of Williams would taint that but it doesn't....  E makes it easy because it is for him and he is a lovely, good natured little boy.

But it's more about me, E's Dad.  E is a little trooper - and never seems to let things get to him - wish i could say the same for me.  There have been times this last year when i have wondered if this is something i can do.  Well, I'm still here - and that's worth celebrating!  Still here, still learning and every milestone makes me want to help him get to the next one.  I have taken to seeking and/or listening to advice.

Anyway, you know all this - but it has given me a great opportunity to read over the blog and think about where I have come from.  After all, that was one of the things i most wanted to use it for.  So here's to the last year and all the learning, but more importantly here is to the next year - and to more learning - but more importantly to just enjoy being with E.  One thing this last year has taught me is that it is easy to watch time go by and miss the doing.  I have seen a lot and studied a lot - but perhaps i need to forget studying and watching and thinking and DO...

Finally, I asked a series of questions at the end of the post last year, and I thought I would revisit the same list to see how they differed:


Have i found peace with ths yet? 2011:No.  2012: No
Do i know anything about the new world i find myself in? 2011: No.  2012: Actually, yes I do.  I'm no expert - but I'm learning, bit by bit.
Am i ready to learn? 2011: Oh yes.  2012: Oh yes.... more than ever - its slow because you need to learn what is needed now - can't put 20 years time in place now.

Not my best post - but it was kind of an interim one because of the day - I have a couple planned that will appear here soon....

God Only Knows

God Only Knows What I'd be Without You - a post about E's Mum...

When E's mum and I got married I wanted the first dance to be to the Beach Boys "god only knows". I settled for the last dance and as an aside wore flop flops, something I swore I would do on my wedding day! The song makes me think more of her now than then - God only knows what I'd be without you

Anyway, E's mum is my wife, but she is so much more. She is the one who let me deal with the news about E in my own way. She is the one who encouraged me not to hide from it. While waiting for the news, it was her telling me that hoping was fine, but that E had Williams Syndrome and deep down we knew it.

E's mum has taken up a position with the Foundation. She has spent countless nights awake with E. She's been covered in unmentionables from the little love.

She does all of this with very few words of complaint and all the while putting up with me and my ways and still manages to indulge my hobbies and bring my boys along as a cheering squad!

Without her I'm really not sure where I'd be right now and don't like to think about it.

Why have I chosen today... well today is her birthday. I'm downstairs with the boys and about to make breakfast as the boys really want her down now.

So, E's mum, the person who makes this dad's journey into the unknown a whole lot more successful, fun and interesting, Happy Birthday from me and the boys.

Next time, normal service will resume and my journey into the unknown will have an E update.

It's Hard to Dance with the Devil on your Back

A couple of things which have been on my mind since my last post - the song lyrics of the title and a part of the storyline of one of my guilty little secrets.  The guilty little secret? - Desperate Housewives - I have watched every episode (and this is not because E's Mum watches it - in fact, she doesn't watch it at all!).


Watching a recent episode of Desperate Housewives, post Mike Delfino's death, his widow (Teri Hatcher) discovered he had a sister that she didn't know about who had severe autism and lived in a care home.  It turns out Mike also had no idea he had a sister, as his parents put her into a home rather than "suffer" the life of living with and caring for a child with these difficulties.  Things like that affect me a lot these days - and quite honestly would probably have failed to stir me at all previously.

While watching this, I had the lyrics of the title flash through my head.  I know the song was written about abusive relationships and things - but the line above still works for me - on bad days I think it summarises it quite well.  Honestly, there are days when you hear the little munchkin wake up at 5.15 and think that you can't do it again and again.  BUT, one thing I would say is that no one has said it would be easy, no one said having a little one with Williams Syndrome would be a delight and a joy every day, I guess that's why we were given the news in a very sympathetic way and everyone was so welcoming to us at the picnic last year!  They knew what was coming, we didn't....

So, when I'm having a tough day, and I feel like the devil jumped on and I can't dance through the day, I have used another guilty secret to combat it.  I am an avid watcher of a variety of shows on the History Channel - Swamp People, American Restoration, Pawn Stars - but the one which brings a weapon to my arsenal here is.... American Pickers.  The particular episode showed Mike and Frank "picking" an old bar which had a mechanical bull in it - and they each had a turn.  This took me back to  a trip to the USA some 22 years ago when I watched a very competitive mechanical bull competition - and how even the best were eventually dispatched by the bull.  What does this give me?

Well the attitude I start bad days with now is.... as long as I keep dancing and buck and kick more aggressively, the devil won't be able to hold on.  E, I think, knows this - he gives me enough reason to keep dancing every day - and on the difficult days I perceive more affection and love from him.

Time to put some music on - I think I'm going to need to dance my heart out this week - lots of appointments - and that's never easy!

"I Just Wasn't made for These Times"

The title of this post is slightly misleading - but over the last few days while I have been thinking about what to write about this, I kept coming back to something like, "I just wasn't programmed like this" or "I just wasn't made for this".  Well a lesser known fact about me is that I have long been a fan of the musical stylings of Mr Brian Wilson, especially with the Beach Boys - so I settled on this title.  In fact, it would much better be called I just wasn't brought up this way.

This week I have had a long conversation with the Department for Work and Pensions.  This is based on the fact we received a letter from them, stating that the application for E to receive Disability Living Allowance has been rejected.  During the conversation they were referring to this "standard" that the application had not reached.  This standard seems to refer to a mythical line by which all people of the same age can be judged against, as needing more assistance or not.  This is obviously much more complicated when you talk about someone who is one year old!  My reference to the "mythical line", may be unfair - but it is... because there is no way to find it out.  I would happily read all of the standards by which they would judge E and make my own mind up whether it is worth me spending some considerable time on the forms.  I object to spending that time only to be judged against something i have no access to.

Now this is where we come to me "not being made for these times" - I am an honest man - I am a fair man - BUT I am (as you may have guessed) a Dad.  In that I want to be honest and fair in my fight to give my boys everything I can.  I will not steal to do it, I will not lie to do it and I will be realistic in what I try for.  So I think it would be nice to be treated fairly and honestly.

Those of you that know me, however, will know I am built for a fight, both mentally and physically, I am not designed to shy away from the argument - especially if I'm right.  So DWP - you are on my list - it's not a long list yet - but I'm happy to open as many fronts in this war as it takes - and I'll recruit an army behind me if I need to - E has a big family and a lot of our friends will stand up for him too!  So I'm going to lobby for some open and honest governance in this country - and rather than just ask people to tell a story - asking for documentary evidence.  This is what I think should happen:

- Give people the criteria against which they will be judged.
- Give people the evidence standard which is required to be provided.
- When you write with a judgement, break it down into the full reasons why.
- When people call to talk about the poor quality judgement letters, don't take 2 weeks to call back.
- When you do call back, don't treat people like they are telling lies.
- When you call, don't treat people like they don't have the intelligence to understand.

This is not a forum for me to put Es problems in detail - and more importantly, this is something i have documented - I hope this is one which will be resolved quickly!

Health and Happiness - what more can i ask

Since becoming a Dad I have realised that the modern world puts a lot of pressure on parents - although i understand all of it is self-imposed.  Your hopes and wishes almost need to be publicly displayed and financially planned for.  The competition for school places with that "outstanding" label - and the pride that getting the young sir or madam in to that school will engender, despite what I see as a completely random and arbitrary system at times being used to allocate the places.  This is not something you can do much about (aside from move next door, find God or, allegedly, pay for a new library...).

Let me first say that I have entered the system with C - albeit in a very early stage and I am very pleased with the efforts we have made on his behalf.  I am by no means looking at our family as existing outside of the system and looking in  - however, it has had me thinking since E turned 1 and thinking about what my hopes and dreams are for him - and whether the experience with E is changing how I dream for C.

This was all focussed by watching the "undateables" this week - on which there was a young lady called Kali who had Williams Syndrome.  For those that are unaware of the show, it looked at people with disabilities and their first forays into the world of dating.  Now I had deliberately avoided the rest of the series, in the assumption that it would be an entertainment show which made everyone look at the "Freak Show".  This was a real fear as I had overheard people talking about it in those terms.  However, an opportunity to see Williams Syndrome highlighted on national TV was unmissable for me and E's Mum.  Now Kali was a great advert for Williams Syndrome - here was a young woman who knew her own mind, she was bubbly and friendly - and that is what people noticed about her!

So back to my hopes for E...Do I hope he finds love, do I hope he does well at school, do I hope he lives independently, and has any of this changed the way I hope for C?

Well, for E I want his life to be happy, and as full as it can be.  I do hope he can one day live independently - but if that will make him lonely, plans are in place for him to be able to stay with us.  I hope I can get him in to a school where he with thrive (that is no doubt a relative term - but thrive all the same).  I want him to have friends and to live without fear of bullies and those that may take advantage of him because he has Williams Syndrome.  I do not care if he finds love as i hope he will always have the love of his family anyway - parents, grandparents, and when we're all gone, C and their cousins I hope will be a formidable family group to make sure E is always loved.  If he does find love I hope he finds someone who is really into him and that he makes a good boyfriend or husband.  I hope he lives his life with smiles - not bewildered as to why the world treats him (because i hope the world doesn't treat him that way).

So, what about C.  Honestly, I want the world for him - but I have been thinking about this a lot over the last few months... most of all I want him to be the sort of brother E will need.  i want him to care about his brother (not the same in my mind as care for him) and I would love to have instilled in him a protective streak that will ensure E always has someone looking out for him.  But I have come to accept what i want for my boys may differ in the detail, but healthy and happy is about all I can really focus on for the final result.  However, what i really want is for my two boys to be friends for the rest of their lives.  I would love to see, in my old age, them have a cuddle the way they do now before bed - perhaps talking about the rugby or football results.

Of course if they can both have successful careers and lots of money, we all know that will make life easier... and i guess that brings a final part to it - healthy, happy and as easy a life as possible.  Boys, best if you don't challenge this when it comes to homework time - I will start preparing the reasons now as to why it doesn't count for that.

Birthday Boy - One Hell of a Year!

Tomorrow, E turns 1.  That's a whole year since we made a dash to the hospital (C too) and just got there in time, but he was born in a room in the hospital - ok it was an hour after he was born before he saw the delivery suite but hey...

What a year.  I have heard for the first time of Williams Syndrome.  I have read more about a single disability than I ever thought I would.  I have totally readjusted some of my life views - and very much so the dreams and wishes for each of my family.  I have applied for and failed to get a specific job which may have helped me to feel useful to a wide community I had never really been involved with before.  I have started a mission to raise funds for a charity which will directly affect the ability of my E to reach the potential he has.  I have sat in a Faraday cage listening to repetitive vowel sounds as part of a study on E.

Why did i do all this - because of E.  Because, little man, I would do anything I could to make life a little better, a little happier.  Most importantly, I would do anything for just one more smile - despite there being no shortage of them from you.

So E,  here is to another year of growing and learning (you too if you want).  I'm sure it will start at about 04:30 tomorrow - and for once I will be very happy to see you, and wish you a happy birthday.

Next time I've been thinking about my hopes for the future.

Would I Change it?

So,  following on from "What if we had known?" is the perhaps more relevant question (because we didn't) of whether I would change what E is.  Now before anyone gets me wrong, E is my son and that remains, and he will be every bit as loved and cared for as his brother, every single bit!  I will always have a careful planning eye on E's future because I will always want to make sure he is looked after.

I guess this is something i was always going to ask myself - would I change E if I could?  I have read a lot recently about parents of special needs kids saying they wouldn't change them for anything, and i get the impression that this is part of the way people deal with things.  Again, like the last post, I am not here to judge anyone, just give my thoughts and feelings and look back on them one day just to see how things change along the alternative route life appears to have taken.

So, where do I stand on this?  I would give everything I own, just not to here the words E has Williams Syndrome. If one of his Dr's told me tomorrow to leave the house and everything and start again and E would not have Williams Syndrome I'd get up early to get out first thing and start again.  I love E, and I know he wouldn't be the same if he didn't have Williams Syndrome, but the over riding thing here is that, he wouldn't have Williams Syndrome!  I would have to worry about him like I have to worry about C, but not all of the additional medical and future concerns.  I will always be proud of him, happy for him, sad with him.  I will try to bring him up to be everything that he can - but that doesn't change the fact that I would happily give my own life if it meant E would live without the difficulties which are likely to come his way.

Both my sons are cute, both amaze me, and both make me happy and unhappy in their own little ways and whatever i can do to make their lives full, fulfilling and fun I will do.  Frankly, if one day in 30 years time, my sons come and watch a game of rugby with their old Dad I'll be happy.  Interestingly, E having Williams Syndrome has made me even more determined to let both of my kids follow their own path, as long as it is inside the law!

I would like to add to this, that C is susceptible to Croup - and for the record I would change that too!  The trip to hospital he took in an ambulance made me realise again that E isn't the only one who needs watching and caring for.


So kids, print this and test me on it one day, lets see how I did.  Although if the offer is ever put, I am not sure you'll be able to print it, read it or that i will be able to write any more.

Next up a post about more fundraising.

What if we had known?

Due warning: this is not an easy post to write and is not likely to be an easy post to read - but its what's been in my head - so its coming out - it has taken me three weeks to get to this...  This was brought up in my mind by one of the things I look at and it got me to thinking.

When E's Mum was pregnant with C, we had that conversation while we were awaiting the result from the nuchal scan, which is used to screen for Downs Syndrome.  Any expectant parent is excited by the early scans, but that one held a real sense of dread for us - what if they told us the news we just didn't want.  Well, we had talked and talked and talked and both of us had decided that we would accept the news and work out how life would change and roll our sleeves up and deal with it - but that it would likely mean we would stick with one.

So, fast forward a couple of years and C is a mad little toddler, who has come out from his little infant ailments and is strong, healthy and so very much a boy!  E's Mum is now pregnant with E and we find ourselves having the same conversation - and the conclusion is pretty much the same - why wouldn't it be? It was the decision we came to the first time - and we didn't need to use it, so decision remained the same.

Now don't get me wrong, there is little chance of scanning happening for Williams Syndrome - it affects 1 in 20,000 approx and beyond that, i am not certain anyone has ever been able to determine an easily detectable test for it in utero.  However, E had extra scans focussing on the heart due to a variety of issues i had.  Perhaps they may have been able to tell that there was something not quite right with his ticker?  So, what if they had been able to, what if they had said, "E's mum and Dad, E has Williams Syndrome".

Well, I don't think it would have changed a thing.  We had had the discussion first time round. If I'm honest, i think second time we had the talk without really thinking it would come to that (how wrong we were).  It would have allowed us to prepare, it would have allowed us to work out how bad things might be.  BUT, the bottom line is that we had both signed up, when it was the specific test they routinely undertake, to play the hand we're dealt.

I do not truly believe you can know what you would do in that instant, unless you are in it.  Genuinely.  To a certain extent we have been put in it - we were told by E's Dr,  and it felt like that moment - i never want to forget  how it felt when we drove home in silence, flopped on the sofa and started googling like mad.  I don't want to forget because I will then never know how far i have come from my lowest ebb.  We had no choice, we had no time, we had a piece of news which changed our lives and our plan for our family in an instant.But, what we did have was an 8 week old baby who needed a bottle, a nappy change and a cuddle every now and then (oh and he had something called Williams Syndrome).  We had E.  E was E.  He had this little character, not much but he had it.

What all of this taught me, is that you can never know what someone felt when they made a decision - and what I feel may be very different to what anyone else may feel.  Some of my more held beliefs remain in me - but i never think too much about other people's decisions anymore - they have their reasons and I don't believe i have the right to consider them as anything but just that.  This has been written for me to remind myself of this exact sentiment!

Fundraising Focuses

While I work on a couple of posts, which are going to take a bit of emotional energy, I thought I would share some of the stuff I posted on FB when I was fundraising for the Stroud Half Marathon last year.  I decided to focus on some of the aspects of Williams Syndrome (positive and negative) and looking back on it, it was probably what I was doing instead of this in my quest for self counselling.  I have recorded them here, in order that I can look back on the things that I was learning in the early days of knowing about E.  Re reading some of them makes me realise I must have been looking at it in a positive light as I was picking out things I thought people would educate and challenge people.  Well here they are - but I'll be moving on for my next post and be back to the internal.  Hopefully have a job update by then too:

This weeks comment is brought to you courtesy of Stephen Fry and his recent series "Fry's Planet Word". I watched the first episode last night and Mr Fry was explaining how the difference between humans and chimps in terms of speech comes from very slight differences in Chromosome 7 - this caught my attention as chromosome 7 is where a micro deletion causes Williams Syndrome. One of the symptoms of Williams syndrome is a strange change in linguistic capability. Williams people often start speaking late, but they make up for lost time, catching up with and sometimes surpassing their peers in ability. However, while their speech is strong, their understanding of what they are capable of saying is not. This hit home, when in conclusion to episode 1, Mr Fry went back to a family home where there was a two year old girl. He explained that she was speaking in sentences and learning words all the time, but that she understood more than she had yet learned to say. I was left thinking of the 25 genes that are missing from E's make up (from Chromosome 7) and how they have turned that completely around and that he is likely to be able to say far more than he is capable of understanding - a fact that could affect his education, potential work and social aspects of his life greatly.


An easily visible symptom of Williams Syndrome is the unique set of facial features that come with it. They are described as Elfin looks - and generally show a slightly larger forehead but very narrow face below the cheeks. Many Williams people suffer dental problems which become a large part of what people see. But what they have to contend with is balanced by a smile that is nothing but addictive and infectious - E can already make me smile on my worst days just by giving me a grin. I think ear to ear smile was written about a Williams kid somewhere.


Williams people are often found to be highly sensitive to sound. This is caused by an unusual enlarging of parts of the inner working of the ear. It is possible that E and other Williams children will need to wear ear defenders during every day activity to protect a very delicate part of their body. This can cause a great deal of distraction and discomfort at times. However, many Williams people are very interested/talented in music and indeed the enlarging of the areas of the ear is often also seen in professional musicians. This shows the positive balance which comes from some of the difficulties which Williams people have to contend with. Spotify gets a work out keeping music playing in the house right now!

I will be doing a little bit of work on the page soon to properly set up the media links,and to the basic information page - start making this more of a resource for those that come on in and want to learn a little more.  It would appear that since E's Mum started a blog, I have a few visitors.  Glad to have you all, but please forgive the predominantly internal nature of what I write.

How Far Will I Go - Apply for a New Job?

E's condition has made me wonder just how far I would go to in pursuit of doing all I can for him.  Recently, an opportunity came up which would test that directly - a job opportunity.  Without going in to too much detail, this job opportunity is an area I had been thinking about in terms of Williams people and their vulnerability in the world.  So what do I do?

I have done the same thing for a living in one guise or another for 13 years (since I entered full time permanent employment).  It's what I know, and I even get some satisfaction out of it.  Don't get me wrong, it is not perfect and I have my issues with it - but its what I do!

Well I have prepared my application, I have written against all of the competencies and entry criteria and I have bought it home to review it.  It is my intention, tomorrow, to send the application off and then to wait until the 8th  for shortlisting.  Honestly, I do not hold out much hope for my chances of this, a major confidence issue when it comes to job applications coming out there.  But, I will apply and I will hope.  I would love to get the job - I already have so many ideas for it.  In fact I have so many ideas that while I may not have the job, I will bring my ideas to fruition in one way or another - although it may miss the wider audience available with the job.

So, wish me luck, cross your fingers, do whatever you do when someone wants some positive vibes - I really want this job - and that is how far a Dad on a journey into the unknown will go!

P.S. I would like to note that I also want to do as much as I can for C - however, I understand that the two are very different things.

New Year's Resolution

Yes, yes, I know, I'm running a bit late - or I'm claiming Chinese citizenship/ancestry and then I'm bang on!  As with most things these days - my plans seem to be curtailed with one C & E related activity or another.  Christmas, New Year and a child's birthday basically make the end of one year and the start of the next a busy old time - and I generally forgive myself for some tardiness.

So, back to the business of the day,  that resolution.  I have caught myself countless times since W-Day (July 8th), planning for the future.  This has ranged from sorting childcare - I started looking at various options in September, despite E's mum not returning to work until January - through to making enquiries about building work we may be able to do to the house in order to provide for E's future, probably living with us.  It has even gone through to looking at a property becoming available at the back of our house - a flat.  Perfect location if he is able to live semi-independently.

Let me remind you (by you I mean myself), E is 9 months old.  I am planning for major building works and possible property purchase for a 9 month old baby - I do believe I need a reality check!

So lately I have been thinking (as per usual, about the future) and the conclusion I have come to is that the future is a long time and no mater how far we get through it, there is always more waiting.  I began to wonder what am I missing out on in the here and now - what might I regret allowing to pass me?  So my New Year Resolution (Chinese or otherwise) is to live more for the here and now - and by that I do not just mean in an appointment attending care ensuring capacity.  I mean in a roll on the floor, pull silly faces, get covered in slobber, have my fingers chewed, etc, etc capacity.

I'll let you know how I go - but the new way sounds a lot less stressful!

A Forgotten Point of Order

When i was writing my 8th of December post something happened which led to an abandoned draft... i was found out! E's mum came downstairs when she had gone to bed and not thinking about my actions, i shut the laptop a little too quickly.

This led to E's mum floating and being quite suspicious. I decided divorce was a high price to pay to keep my little secret, so showed her. She read the whole thing and gave me very positive noises. I considered stopping it,but thought someone read it and seemed to like what i had written - even if he had a vested interest in the case.  I thought longer, and begun to wonder what this cold be one day.  While right now it is an internal dialogue and what is on  my mind, one day it will represent my entire journey with the whole Williams Syndrome thing.

So i have my second member and this made me think about when I might publicise the fact I have been doing this.  I didn't think too long before forgetting all about it.  That was until E's Mum recently started a blog of her own and looked in to traffic and things.  So I looked at mine - never thought abut it - never expected it - I have never told anyone about it.  However, I have been viewed, a lot - USA, New Zealand, Russia and Germany.  I'm amazed - truly amazed - spurred on, I have decided to tell people on E's 1st birthday.  This is still for me and will remain that way until I feel that what I have to say can be deliberately aimed to help someone else.  If in the mean time it helps someone, or someone finds it interesting, I'm glad - and I think I'd even like to hear about it.

Two posts in a week - maybe I'm really getting in to this - I've certainly been thinking more about things I'd like to get off my chest or talk about on here - hopefully you'll see some of them soon.

Cheerio for today world...