Sunday, 26 February 2012


The other day, I met up with a friend I hadn’t seen for a few months.

She’s got a daughter who’s eight months older than mine, but the age gap might as well be eight years.

Her girl has just turned fourteen, and is a willowy, beautiful, glamourous teenager, forever Facebooking with her friends, giggling about potential boyfriends, falling out with her best mate only to make up five minutes later, sneaking some sort of Alcopop into her bag for a sleepover, experimenting with too much make-up, leaving her homework until the last minute, and buying 3 inch heels from wherever it is young girls buy 3 inch heels from.

I love my daughter with every last scrap of me. 

And yet sometimes I look at my friend’s teenagers and their lives and experiences and potential futures and I wonder. I wonder what my girl would have been like if she didn't have Prader-Willi Syndrome.

If that little bit of that little chromosome hadn’t gone AWOL, my daughter would be a completely different person, and sometimes I wish I could have known her. 

But I feel lessened somehow, when I do it. It’s a kind of betrayal, however I dress it up.

Song is Ben Folds - Trusted


  1. Hello,
    Your daughter can have a very bright future too, despite her Prader-Willi syndrome.
    Who knows, she can be a very good writer, she can be a very good singer... Who knows ?

    And really, do you think that now, your friend's daughter will have a bright future just because she does what every other "normal" teenager does ?
    No dice has been played now.
    Her future will be surely different than your daughter's, but by no mean better or worse.
    To be hyper honest, as a teenager with a Single Sided Deafness and undiagnosed ADHD, I didn't do, nor liked, what every other teenager did. I was more into languages, law, medicine...
    Does it mean that now, I have nothing ? Of course not.
    Of course, my health did play up some of its tricks.
    But nothing is finished. And despite its high and lows, we (my family and I, but also my friends and my GP) build something no less valuable than any other more "classic" future.

    Same for your daughter. Your daughter is 13 yo, and nothing is definitive at 13 yo.
    What can look very bleak at this age may turn out something so bright that no one would believe it, and something which seems such a bright situation can turn into something bleak, so bleak that it's your worse nightmare.

    It will be something different, of course. But definitely and absolutely not less valuable than your friend's daughter.
    No one can have a crystal ball to tell you what will be each one's future.

    Ok, ADHD and Single Sided Deafness are quite different than PWS. But incertitude of the future is exactly the same, I also need help to live in the community because of my sensorial and cognitive impairment.
    But by no way it means that my future has less possibilities than anyone else.
    And who knows, there are some famous personalities with ADHD. If she wants to be famous, it's still possible for your daughter :D

    1. Thanks for that. The thing is, I absolutely agree with you. I know the future isn't guaranteed for anyone. What I was clumsily trying to say is that sometimes I wonder, what if...? And it feels disloyal, as if I'm saying my daughter isn't good enough. That's not what I mean, though. I'm fiercely proud of my daughter and all her amazing achievements (as this blog attests). And I hope with all my heart that she will go on to achieve a lot more, and have a happy life. She deserves it.
      I love the girl she is. But I suppose it's human nature to imagine the girl she might have been.

  2. Hello,
    Unfortunately, unless you have a crystal ball, you don't know what if her future were different without PWS. She could have been a drug addict, struggling in a car accident... who knows ?

    Human to wonder, humm... I honestly never wonder what the future would hold if I weren't having my soup of diagnosis. Because I know I can't know it. I know that everything can happen, soup of diagnosis or not.
    I sometimes wish to be a more usual patient for physicians. But if I were just a "normal" person without anything, going to the doc once or twice a year.... I have no idea, and I don't like dwelling about it. Gastro enterologist told me once (a long long time ago) that even the most "normal" patient can show unusual features. GP added telling me that a physician who thinks only about "the asthma tells the book" lacks the essential when he practices medicine because he is not a doctor, just a machine.
    Because whatever the effort I put on dwelling, it doesn't change the fact that I have this soup of diagnosis and it will stay for all my life. It goes nowhere, whatever I do.
    So I prefer trying my best to enjoy every achievement, and taking everything one day at time.
    Otherwise, I fragilize myself some more, which I absolutely don't need at all.

  3. I think as a mum the perspective is different, we all want our children to do well and be happy its hard not to compare or look ahead and when you do you feel so guilty its like you've been kicked, we all do it though so it must be part of human nature?! I wouldn't change my Ellie for the world, she is such a happy contented little girl who is so easy to care for and love but that doesn't make the future any less scary.

    Charlie G