Facade of fortitude

In my last post I was really pleased to be able to share a documentary that featured Pudding and me. And even happier that it’s been shared and viewed by so many people. I’ve always said that the more times his lovely face is seen, the more chance there is that someone somewhere will recognise MPS the next time they see it.

What I have more issues with though is the comments that follow. Nobody has said anything horrid – quite the opposite in fact. I’ve written about this before. Strong. Brave. Amazing. Inspiring. All lovely things to say – but it doesn’t really feel like they describe me. In fact it makes me feel like a bit of a fraud. I can think of a few words that describe me better – grumpy, lazy, unreasonable, demanding, to name but a few!

Joking aside, just like anyone I’m a mixture of positive and negative aspects. Just an ordinary person trying to cope with this frankly sometimes shitty hand of cards that I’ve been dealt. You would all do the same. You really would.

Whilst I feel like I’m nothing special there are others in the MPS community who I think are. They are dealing with the same horrible diagnosis but with an extra helping of difficulty: money troubles; single parenthood or a troubled relationship; no family support; two or more children with the same condition. They are the amazing ones.

Maybe I have the words to express our story better than others but again I’m not special there either. I haven’t really written about the blogging event I went to last week (apart from just a smidgeon of gushing about the lovely Gethin Jones). But it was a brilliant evening celebrating the writing of many better people than me. It also served as a reminder that while Pudding’s condition is life-limiting, it is not at present life threatening. Two very lovely ladies stood out for me – Little Mama Murphy (writing about her profoundly disabled son), and Living with Lennon (Lennon sadly died in August last year). Both their awards were very well-deserved. They too are the amazing ones.

I’m ok with not being amazing. There will always be the times where I feel like a fraud or know I’m acting strong despite all the fear and anxiety churning along underneath ready to drown me. But for me, it’s enough to be enough. As long as I have the love and support around me that helps me to keep going. As long as I can make my gorgeous Pudding break out into irrepressible giggles. As long as I can feed my family and juggle those appointments. And as long as I remember to allow myself the occasional wobble without losing myself completely, then that’s fine with me.

Pudding in front of some greenery. He looks a little pensive or worried.Perhaps I should change the tag-line of my blog – Facing the future with a facade of fortitude…?!

7 thoughts on “Facade of fortitude

  1. And if you asked those people with ‘more’ to deal with, they’d probably say the same as you! I think we all admire people who deal with things we think we couldn’t cope with, it’s only when you get there yourself that you realise that living with it is better than the alternative. You’re amazing, but you were that before Danny’s diagnosis. It just brought it into focus.

    Like

    1. huntersmum

      Like I said in the video there have been many times that I’ve wanted to simply run away from it all. But that ain’t an option (for most decent parents!) so I guess you may be right. A little bit anyway – I’m still not going to agree that I’m amazing!

      Like

  2. You have written as if you are inside my mind! I always reassure myself with the point that I am blogging because others don’t have the time or strength to, because they have different challenges. We all do what we can. But you should accept that you are an amazing mum 🙂

    Like

  3. mummywho

    I’ve never heard of MPS.. what’s the link to the documentary I’d love to learn more about it. Your blog seems like a wonderful place to raise awareness and your family’s story, also your little boy is adorable.

    Kay xx
    http://www.mummywho.com

    Like

  4. Pingback: The ‘i’ word – A Hunter's Life

Leave a comment