Wednesday November 14th


We went to the school parent/teacher meeting last week. It was the first time to meet Ro’s teacher which he’s had for the past two years. So it was a big event and a personal achievement. Luckily we are well supported by the school. My spoken Irish doesn’t translate well on my eye-gaze computer! I have struggled with phonetic translation. So bread ‘aran’ becomes ‘awrawn’ and cheese ‘cais’ shapeshifts into ‘kawsh’! Yes the difficulties associated with an all Irish school when the main Irish speaker in household cant speak! But, as I said, the principal and teachers are hugely supportive, offering help whenever they can so we are both grateful and relieved by that.
Kitty is five today! We had a party at home last year but we chose the stress free option this time. ‘Chuckies’ is an activity centre in Cork, hell for some but wonderland for kids! I will give it a go but will line up an escape car if it all gets too much!
I’ve said before that the ‘secrecretions’ (official word for ‘dribbles’) is one of the most challenging symptoms of this condition. Especially when I am completely dependent on others to mop it up. Recently, sitting outside, a little pal of my kids sat herself down near me. I started dribbling and felt so awful and helpless. That image of myself so desperate and helpless overwhelmed me and the little girl turned away as I began to cry. Poor little thing. Might have done the same when I was her age. Very aware of how I must appear in public “a dribbling non-talking unfortunate somebody”. This image of myself motivates me to write as I want to say ‘but I’m ok on the inside, my spirit is working so well ‘! This brings to mind the prayer I hear through the baby monitor some nights. ‘help mummy to be strong on the inside ‘. The kids refer to me as being ‘weak’. We haven’t called it by its true name and I am happy with that.
To finish something Ro said one time which I love: ‘Mummy is the strongest weak person I know ‘!

Here’s a song I love:


12 responses »

  1. Emma,
    I’m moved beyond words.
    Your words went straight to my heart and it’s overflowing with love for you xxxoo
    I loved what Rowan said..
    And You’re also the strongest “strong” person I know!
    Happy birthday Alannah!
    Love to all xxxxooo

    • Hi Emma ,
      I just got your blog details from your Mum today. She called over with Morna. It was great to see them both looking so well.I cant imagine what you are going through, but even though we have not been in touch for a while you and your family are in our thoughts alot. Patrick is very slowly getting better, but I am almost afraid to say that in case he has another set back.
      Talk to you again soon.

      Anne from Kerry

  2. Hi Star,
    But you are NOT a dribbling non talking unfortunate somebody but I do understand that you felt that way at that moment. I just wish I had been at your side.
    The song you posted is soooo you! I love this & love your music! Please post more! SPECIAL xxxxxxx

  3. Hi Em,

    So funny to hear how you’re managing to translate the gaeilge into ‘eyegaze’! 🙂

    And such an important message to look beyond appearances…coming hot on the heels of the Paralympian summer, your writing will change the world Em. Your spirit shines so brightly through it!

    Ro always was a perceptive little boy!

    Happy birthday Alannah – hope you survive chuckies!

    Lots of love xxx

  4. Hi Emma, thanks again for recent blog, you are living your life with such grace & beauty -it’s inspirational . I Love the song -(and the lovely beardy man-you gotta have one of those! )x Kari

  5. Hi Emma.
    Love that song. Hope you and the kids enjoyed the music from Saturday and thanks for seeing me . Listening to your music all weekend and thinking of you. Such a warm happy homely aura in your home. Getting the hang of this blog thing now. Cal xx

  6. Hi Emma,
    Just had a message from Bertrand……and have started reading your blog…..lots of love and good vibes from south west France! x paul (tiernan)

  7. Hi Emma.
    Love that song.Hope you and the kids enjoyed the music from saturdayand thanks for seeing me. Listening to your music all weekend and thinking of you. Such a warm happy homely aura in your home. Getting the hang of this blog thing now. Cal xx

  8. Dear Emma, Ruben here, one of ‘Jay’s work mates. I am really enjoying your blog and telling friends about it. I am so glad you got the chance to write and share your inspiring thoughts with the rest of us.
    On a more mundate note- a few weeks ago you mentioned shopping in Noa Noa- I love it too – and I reckon if you like their style you will like ‘white stuff’ label also – check it out online!
    Tog go bog e!
    Le gra

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