Like a Prayer


I felt tiny wirey legs scuttle across my neck earlier. My carers looked as if they’d seen something repulsive. I was still waiting for an answer about the neck tickler when the tissue emerged hoping to squash the hairy little fella into oblivion. Poor little spider, “little? “, he was frickin massivo, I was told. Anyway, spiders are lucky for me and if a big one treaded on me well that’s even luckier.
I could do with a bit of luck in the chest area overall as I ‘ve been experiencing difficulty with my breath. Nothing major though but its a change and from where I’m sitting, change is frightening. I’ve spent a lot of days of endless crying over my mortality and furious with life for inflicting this on me. One afternoon I broke down seeing a mum loading shopping in her car and kids inside, just like I used to do, its heartbreaking what I and so many other mums in my situation have been denied.
I find it so hard to write when I’m down. This week I feel much better especially since Lucys’ visit and wonderful laughter crept back into the house. Lucys’ a tonic for the soul and I love when she’s here. I feel close to my lovely Dad when she’s around as she shares the same quirky sense of humour as he had.
I want also to praise Jonnie because he’s so amazing. I hear him getting up early each morning to meditate [he’s been doing that for years ]. Then coaxing kids from their cosy beds and getting them out the door on time. At weekends he rarely goes out as we’ve less help and it’s full on with the kids. Rowan does rugby on Saturday mornings now and Kitty’s started soccer. They look great in all the gear and the sound of them clunking into my bedroom on wooden floorboards to kiss me goodbye is adorable.
Every weekend Jonnie cooks a roast on Sundays. Roast spuds, mashed, veggies, gravy, the works! Often, a freshly baked cake too. Then there’s the tidy up as anyone engaged in this activity on a regular basis knows. Every evening, Jonnie gets me ready for bed and does things no husband should ever have to do for his wife. My love for him has grown deeper than I ever could imagined. I respect him so much and appreciate everything he does to keep our family going as normally as possible. Our kids are happy and have lots of interests and thankfully good at doing their homework every afternoon.
Jonnie often reminds me of the importance of meditation in his life. Without the practice of being still and knowing that all will be ok, our family might not have made it to here. I don’t practice regular meditation any more. I did it for years before I got Mnd. Perhaps it’s the fact that I’m sitting down constantly and being still whether I like it or not, my life feels like some kind of meditation or prayer.


8 responses »

  1. Hi Star,

    A truly wonderful piece and such a pleasure to read. I second everything you said about Jonnie! You & I are so lucky to have such cool men in our lives & I know Dad would be SO proud of how well they look after us. I love that you feel close to Dad around me – being around you ( and Mom & Simon ) probably brings it out & I love that I can be like that & you get it ( as only a Milller would ! ) 20 days and counting! Bring on the winter fun & laughs & cozy fires!

    Bon nuit,
    Love Dol xoxoxo

  2. Beautiful post Emma..
    So many lines and emotions touched me to the core, and bought tears to my eyes..
    I can feel all the love and devotion..
    Jonnie is such an amazing person.. (I knew that the minute I met him!).
    Once again, you inspire and energise me and bring me right where I need to be, appreciating the present moment and all the simple joys of everyday life.
    Love you,
    Nick xxxooo

  3. You should have been an author Emma. The words and the emotions just jump out of the page at us all. You have a unique talent and skill set which I for one am truly glad you are using to the maximum. Of course you will have down days but never forget that long before you had nmd you had down days also#johnnyisayourhero

  4. I salute your grace under spider pressure – and I hope that it does indeed prove to be a good omen for you. Maybe will help with the breathing as was on your neck area…? Hoping the next 18 days whizz by til Lucy is back, can’t wait to see you both! xx

  5. ‘My life seems like some kind of meditation or prayer’….wow Emma, how many people are lucky enough to feel that. A beautiful way to see one’s world, love it.

  6. I am a bit late to this post but really enjoy reading your well crafted words! you write with such an ease and it really does make us feel close to you and be able to hear your voice loud and clear! I love what you said about LJ reminding you of your Dad, I feel the same way about Becca, her humour is so quick and sharp and very ‘Miller’ which helped her/us through some tough times too. Hurrah for wonderful sisters!! …..and cousins 🙂 XXXX

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