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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.


  1. You're doing an amazing job of raising E and C!! Tho we don't see much of you all at the moment we'll be living back in the UK next year and look forward to meeting both your little treasures.
    D, C, C & T in Kampala

  2. E's Dad,

    Just came across your blog while doing my weekly google search for news on Williams. My son Aden was born on April 20th, 2011. He too, was born with a hernia. This lead to the heart murmur being detected, which lead to the cardiologist. Aden was diagnosed with Pulminary & Aortic Stenosis and luckily our cardiologist was able to make the link to Williams. From there he sent us to genetics to confirm.

    I was taken aback by the similarities in the paths that our lives have recently taken. Whether it be the fear, shock, uncertainties, challenges, conquering of milestones or absolute joy that comes with raising a child with Williams. Great to find we're not alone in this journey.

    Halifax, Nova Scotia, Canada

  3. Hi Tim, definatly not alone but its sometimes hard to find those that are in the same boat - especially where you are and the distances involved. I'm sure you're in contact with the Williams association in Canada. I thought the information on the site was great! I have found it quite liberating to write this stuff down - sometimes stops me getting angry about it.

    Be good to stay in touch. I'll drop you a line if that's something you'd like? Hope Aden

  4. That's supposed to read hope Aden is doing well. This mobile app is not the best!

  5. LOVING your Blog. Only found it tonight but have been reading non-stop. Our second child is just a few month's older than yours and also has Williams Syndrome. Reading your BLOG is so reassuring. Life is good but the emotional struggle is getting to me tonight. Thanks for your words. x