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Friday, April 20, 2012

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.

Thursday, April 12, 2012

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.