Monday, 20 February 2012

Why I blog

It's two years now since I started blogging as a way of reflecting on our lives with Amy and recording our experiences of living in a world that felt like it had turned upside-down. And sounding off, of course, on matters large and small, personal and political.

I mostly love it. I find myself thinking, sometimes, in the middle of a bizarre conversation or a trying situation about what kind of blog-post it might make. I love the connection to all sorts of people 'out there' who are living with the same things and facing the same challenges. And it helps me explain, without having to actually explain, to family, friends and anyone who's interested what living with a severely disabled child really means for a family like ours, and how I see the world as a result.

But every now and then it makes me squirm. I wake in the middle of the night and sit bolt upright and think "I can't believe I posted that" or "How does that comment make me sound?" I worry, by turn, about being self-regarding, or trivial, or pompous, or misguided, or - worst of all - boring. Sometimes I feel slightly horrified at the whole business of 'living out loud' like this. (Even if I'm only telling a partial truth: while everything I write is true, I don't write about everything!)

Recently I've been fretting about getting the 'right' balance between positive and negative. (Whatever that might be - life is a mixture of both, is it not, with some days featuring a bit of positive and a bit of negative, as well as times when one or the other seems to go on for weeks.) I've been feeling uncomfortably exposed, as a parent who isn't patient enough, or selfless enough, or generally 'doing' enough. It's made me question the point of the whole blog-thing.

And then the other day a friend shared this quote which captures why I blog the way I do and why I think I'll carry on. It's like a blogger's manifesto:

"Being authentic is being brave enough or just candid enough to be honest about what you are experiencing and who you are, whether it is popular or not. A person gives a gift to other people when they say, 'This is what happened to me or this is how I truly feel, no matter what the popular belief is about what I should feel.' Whenever you are honest, you are speaking for a thousand silent people who don't have the voice to say what they really feel or are really experiencing. So if you ever talk about [the thing you went through], you will touch a million hearts. Because you are speaking for more than just yourself. You are never alone in what you are feeling."

Now I'm not sure about the 'thousand silent people' or the 'million hearts'. When I blog, I'm speaking for myself. But I'm trying to do it with as much honesty and authenticity as I can. Because really, what's the point of creating a perfect image of the person I'm not? It would be dull to write and, I reckon, even duller to read.

6 comments:

  1. and we love it so yes keep blogging please! x

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  2. Hi Catriona,
    This is Kelly Hargraves Schoeller. I had to comment as "anonymous" because I am too lame to figure out how to comment as myself.
    Keep on blogging sister! This is for you and not so much for anyone else. If people don't like it than they are free to exit off the page for the love of god!
    We all cope in our own way. There is no doubt that living with Rett SUCKS!!! But I refuse to let Rett OWN me or Mackenzie. My new motto (as written by my fellow Rett Mom--Megan) is SCREW RETT!!
    I love my daughter and I will try to make her life as normal as possible but there is nothing normal about a g-tube,seizures, inability to walk, inability to talk and no use of one's hands.
    No one knows what our lives are like except for us. And even each girl with Rett is so different that we don't even really know what it is like to live with any other Rett girl but our own.
    So there is my two cents--or maybe 63 cents.
    I hope there is some wine in my fridge...

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  3. Hi Catriona, Also sorry to post as anonymous but don't know how to comment as myself either! Please carry on blogging just as you are - I agree completely with the above comment, that no-one else knows what it is like to live with Rett (I read somewhere that on recieving their diagnosis, a doctor told the family that he can provide the facts of Rett, but that is no-where near the same as taking a girl with Rett Syndrome home, which is so true).There is no point doing it - for yourself, or anyone else reading - if you put a gloss over it all. Living with Rett Syndrome is incredibly difficult, but also with magical, special moments and special friends thrown in, and your blog reflects that. On a more selfish level, I love that you post with such honesty and self doubt as I can often relate to it, and then I don't feel so bad!! Sorry!! This is the first time I have left a comment on a blog, put I should probably have said that before. Keep blogging!! Love from Liz (mum to Jessica).

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  4. I love your blog and visit it each day. You sound like a wonderful family and I have every admiration for you.
    P.S on the comment as: I just scroll down to 'Name/URL' and put my name in and leave the 'URL' blank.

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  5. Thanks for your nice comments, ladies.

    Kelly and Kelly - I am always cheered by pretty much anything either of you has to say. (Spooky fact: I have four friends called Kelly, and they are all Rett-mothers...)

    Liz - I really appreciate what you say. Sorry not to have been in touch recently. When I've got this house-move out of the way, let's get together again?

    Margaret - Thank you for following our doings so faithfully, and for your wise and sane advice. Really hope we might have a chance to meet you and Stacey one day.

    xxx

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  6. Hi Catriona,

    I'm the nurse who'd commented on your blog a few weeks ago. I know you're not into that hokey crap of, "Oh, so-in-so was fated to be a special needs parent because a magical angel chose them," etc. And I appreciate that, not only as someone touched by a friend with Rett's (and my patient is like a little sister/niece to me), but as a former cancer patient and an ACT UP volunteer. We all wish these things hadn't come to us. And that's okay. That's human.

    But your straight-forward attitude, your despair, your anger, your joy, is what it is. And people need to hear that, to know it's all right to experience the whole range of emotions about their daughters and Rett's. Your blog has made me a better nurse and friend to my patient and her family, and perhaps, in that sense, I was meant to find this, which also means you were meant to keep living out loud.

    And that is an encouraging thought.

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