November 26th


Love the line in Laura Marling’s song from the last post: ‘let it always be known that I was who I am ‘. I feel it sums up the human quest to be true to oneself. As I said before my body is crooked, twisted and unreliable but inside I am well thanks to this eye-gaze computer which allows me to express myself. I honestly think I wouldn’t have made it this far if it wasn’t for this amazing machine. I feel I am being true to myself in writing this blog.
I was thanking Jay last night for the great job that he ‘s doing especially at weekends with the kids and the housework and everything. We spoke about the blog and he said how he feels it gives me back a sense of the dignity which has been stripped away by this horrendous condition that makes me completely dependent on others.
We managed to get to Smyths Toy Store on Saturday to pick up some Christmas pressies for the kids. I was thinking of how, in 2009, I was tearing around Mahon Point shopping centre for the same cause. I had been driving without lights on and somebody went out of their way to tell me following me home. I couldn’t believe I had been so stressed in only November! But I suppose that’s what mothers do! Always thinking of their kids and how to make them happy.
That’s been the hardest thing, letting go of the urge to do everything for ours. It was total heartbreak last year when strength and power were gradually leaving my body. No longer being able to do anything for our most precious little darlings. But it’s easier now. I console myself with the thoughts: ‘I am here for them now ‘ and ‘I am here doing my best despite physical restraints’. But when I manage to get them to snuggle on my lap I have the added worry of dribbling over them. “Fuck! Does it never end?” Writing that just set me off in tears and Laura and Kitty look very concerned. Ro stayed in his iPad bubble and didn’t bat an eye. I explain that Mummy is writing about something that makes her sad but Kitty’s interest wanes and she gets sucked into iPad world too! I am ok about that. It would be worse if they were over concerned. IPad off now and homework begins with resistance! It has to be said that although he didn’t flinch when I cried now, Ro is very affectionate and gives me lots of kisses and hugs.
Heard an interesting quote earlier listening to Wayne Dyer ‘if you change the way you look at things, the things you look at change ‘

17 responses »

  1. Hi Star,
    Just reading your blog and yet again feel like you read my mind when you refer to that line in Laura Marlings song. The minute I listened to it I thought of you. Not just present day but Infact you have always been like that …in my eyes….. and I have always looked up to you because of it! Such an enjoyable read Star…thank-you,
    A demain,
    Love Dol xoxoxoxo

  2. Hi Emma

    Lorna passed me on your blog details as I haven’t made it to see you for so long and I know Ana likes to visit so don’t want to overcrowd you all. It’s great to read and keep up with how you’re doing. You are amazing.

    All good here, working hard. Simon is opening up another restaurant so I’ve inherited lots of duties! Hope to see you again soon. Thinking of you.
    Love Lisa xx

  3. Thank you Em – wonderful to read your blog and all you share from inside of you. Your strength and power are so there. So true what Wayne Dyer says – about changing the way we look at things – we have such habits of looking at things in the same old way! I am learning so much about this in myself! In Zen they teach that we must look at something and keep looking at it as we will see more. Whereas in the Western world we tend to say “that’s what it is” and close the door, finish the looking. I have also been very helped by the understanding that what I give attention to increases. I see how I have for eg. thought of myself as not looking well, my hair being limp or whatever and this has increased the limpness of my hair. So interesting to see the difference it makes when I change this thinking and instead I have been practising saying “I am beautiful” “I am whole and perfect” “I am healthy and strong”. This has me feel so much better and I look better too!
    So what if you were to stop giving attention to the dribbling – have to say I didnt notice it at all when we were together last. It would be an interesting experience.
    Oh there is so much to all of us, so much to discover.
    Love you Em and love to all of you and hugs, Gill

  4. …….ps. You are an amazing mother & you are doing soooo much for your kids albeit in a different way than running around after them. Infact you are so mindful in the way you organise their daily routines,health,education,entertainment,fun, adventure & all that jazz.They SHINE and ooze your & Jonnies fantastic qualities ….. You know I am not just saying that because I have always said it! Plus, it’s rare we recognise our own work…. Others do though!!! Keep on keeping on!
    Dol xoxoxo

  5. I’m afraid this will be short Gus, writing one handed and left handed, Artie on other arm!
    Everytime I read your posts I end up crying, laughing, getting angry, feeling sad…a bit of all. More recently I feel relieved knowing you’re doing well inside and hearing your voice through your posts is amazing, I missed it so much. Our visits always end up with me ranting on, talking at you like some loon! You are still teaching us all, this time through your eye gaze, an upgrade from the ole ‘tefal’ whiteboard! You’re on fire Gee!

  6. hi shapeshifter granted i am talking from a position of ignorance regarding your dependence sentence I and perhaps we depend on you to a degree because your insight and prespective is so uplifting ps sometimes at night when there is a full moon and im driving switch all the lights off giulty pleasure dont tell the garda .

    • Could you just tell us what part of the country you’re driving around at night without lights so I can make sure I’m at least 100 miles away, LOL? (love your guilty secret, albeit that it makes the hair stand on my head with fright)!

      • Sorry, this reply was in response to scilly59’s post where he said his guilty pleasure was to drive without car lights when there’s a full moon!

  7. It is so good to hear your voice Emma. I honestly don’t read your blog, I hear it and I see it, and while it often makes me cry, or sets me thinking it always makes me glad to hear how you and your wonderful people are getting on in that lovely house with the poem Jonny wrote for you up on the wall. I guess for a while I feel in the glow of Emma and that feels good. Xxx

  8. Another beautiful piece of writing Emma – your gift is tremendous. No one could look at you or read your words and not know how your love and care for your children is indominatable. As I explained to Roars this morning during a wobbly moment (triggered by a Rumpole-like series of questions about his oldest brother), nothing can break the connection between a Mum and her kids. Looking forward to seeing you tomorrow xxxx

  9. Hi Emma,
    Just wanted to say Hi. I like your blog and think you have a super voice, a real voice. Heard about your blog from Ruben at L’Arche. I know Jonathon from there also. It’s a pity we’ve never met. Take care.

  10. Hi Emma,
    Thank God for the eye gaze machine! Expressing ourselves and being understood is such an integral part of this human experience! Your writing is such a beautiful,honest flow of your thoughts,feelings and reflections.. like another reader said,when reading your blog, your words touch so many emotions… I go through the spectrum; tears from laughter, sadness and mostly tears of joy; as you, your brilliant mind, loving heart and shining spirit are truly triumphant.
    Thank you for the Wayne Dyer quote, it has been my mantra of the week!
    Also loved that line from the song..made me think of a Joseph Campbell quote I love,
    “The privilege of a lifetime is being who you are.”
    Sending Love,
    Nick xo

  11. Hi Emma. Thank you for that. I must have read your last post twenty times this week. I love your taste in music. I hope the Christmas songs are belting away full blast. Hope that you have seen the John Lewis advert for Christmas for 2012 . The Snowman and Snowlady and the beautiful music remind me of you and Johnny. Cal x

  12. Hi Emma

    I got your blog info from your Mum .Your Mum and Morna came to visit yesterday , it was great to see them looking so well. Its been awhile since we have been in touch so its nice to hear you through your blog , your voice comes through loud and pure.
    Patrick sends his love too. He will be in touch when he is a bit stronger.
    Love to Jonny and the kids.

    Anne Mc Glynn Williams

  13. Hi Emma,
    Got your blog info from the wonderful Jackie Boland! Went to school with her in the Ursulines in Thurles. I am so glad the eye gaze is working out for you. My mum tried it and it didn’t work for her but I am glad for you. It takes a lot of concentration and focus!
    I did massive amounts of research on lots of devices another of which is the Brain wave device. I heard them talking about it on the radio last week. I was looking into it this time last year but they were still experimenting with it in Dublin at university level. You should try it out and let your followers know how you get on. It would be a good alternative when eyes are tired.
    Hope you are treating yourself and getting a spot of internet shopping done in between the blogs!
    If you ever want advice on anything let me know I have a world of research and experience esp with bulbar mnd.
    Happy Christmas to you and your family!
    Sarah Ann

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