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Wednesday, February 22, 2012

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!

Thursday, February 9, 2012

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.

Wednesday, February 1, 2012

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.