About

This blog came about because of my beautiful boy, Rufus, who was born with Angelman Syndrome. I love writing but have never thought I had anything interesting or new to add to the blogosphere until he came along. It’s raw, it’s honest and it may occasionally sound like it could turn into a song, as I’m a songwriter at heart. I aim to only write about what I know and feel. I really want to avoid generalising about ‘special needs parenting’ as I feel each special need and learning disability brings its own beauties and beasts to the table. I will leave those blogs to other people. I hope that these blog posts unravel for the reader and for myself some layers of honesty and if I can reach at least one Angel family with a newly diagnosed child then my work is done.

Very occasionally, another subject entirely will grab me by the hand and ask to be written about.

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2 thoughts on “About

  1. Hi lucyhasler, I wasn’t sure how to contact you. I had discovered your blog late last year. As I was grasping for any reference to Angelman Syndrome I could find having just received the diagnosis for our daughter. Your words are so beautiful. So in tune with how I feel going through every emotion and denial and acceptance that happens with a diagnosis like this. I wish I had the ability to write like you – to pull my thoughts and emotions out and get them in black and white. If I could I wish they made as much sense as you! Your boy is adorable. I have an 11 month old daughter – we found out in September. Just wanted to say Hello and that your words have helped more than you might know!!

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  2. Thankyou so much Lucy , I have been moved to find another mother who writes perfectly what’s in my head everyday. The wonders and joys of angelmans are hard to find , i loved your piece ‘so proud’ and ‘face your fears ‘-GO Rufus !
    Our daughter Nova is the same age as Rufus, well she’s 3 next week so think they must be close and we had her diagnosis of angelmans at 16 month, she is equally inspiring and I honestly think I’ve got to a place where i wouldn’t change her for the world , well not for my world anyway .
    Funnily I was only looking about for a blog on angelmans Yesterday after getting back from holiday , thinking i want to tell the world , Yes we can go away , yes she swam in a river , loved watching table tennis and yes she slept in two new houses !! we did it , a holiday that a year ago i thought we would probably never have again.
    I was thinking maybe i should share this , hoping to feed some more real positivity into the online world (in a less American way than I always seem to find !) and I’m always being told to share Novas success as she’s developing ‘above expectations” , like you we jumped on AAC early, excited to show her and our other two kids her ‘voice’ and to normalise it early on.
    I have just spent two evenings reading everything you have written , oh and your husbands ! (Also great job 🙂
    I never expected to find such wonderful writing as never had any joy before , am usually always been left wondering are there actually ANY people out there like US that have a child with angelmans ?
    Shame your so far away as I would blinkin love to sit down with a pot of tea ! Although I’m sure our paths will meet eventually, its a small island and being the mum of Nova seems to make to world flow in the right direction when it comes to meeting good people 😉
    thankyou again , I look forward to reading your journey ,as I am really there with you ( well a fare old bit further south near brighton )

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