All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

Anatole France

Recently there have been lots of changes. First Laura left then Ana so I’ve had to adjust to new people helping me with food and in the afternoons. It requires so much energy to explain to somebody new via the eyes. Laura went back to her family in Galicia. She’s hoping to find a job using Italian or English. If not, she’ll be back to her second home, Kinsale after Christmas. Ana went back to get her wisdom teeth taken out. As I write she is probably sucking her Spanish lunch through a straw! When she returns in January she’s heading to Thailand with her boyfriend for a few months and the rest is a mystery.

Luckily I found somebody I already know to replace her for some afternoons. We found another person through an ad we placed in a local publication. My sister Lucy and her husband and her dog are coming back from their new home in France in two weeks. I am really looking forward to seeing them all. She kindly offered her help in afternoons too so it will be comforting to have somebody else who knows me around. Poor Mum still isn’t back to herself after her fall in our place. She hasn’t been able to visit us as its still uncomfortable for her to move around.

Some good changes that have happened are sleeping so much better and updated software on my eye gaze computer. The HSE gave me a new single bed with an air mattress. At first I found it upsetting to have my lovely double bed taken from me under the guise of a health and safety regulation. But it’s been a blessing in disguise as it’s so comfortable I’ve been sleeping much better. Jonnie getting more sleep too, as I don’t need to wake him to be turned anymore.

Software was updated on this eye gaze by a dependable technician in CRC (who’s board of management have been talked about quite critically by the media recently). Now I can browse the web, watch the Three Stooges with Rowan on my lap or listen to Kitty’s favourite One Direction song on youtube and finally, I can read  books online! I’m so so happy about all this! Up CRC!

Kitty turned six recently. My baby ‘s growing up! Watching her shuffling by on her new skates and pink helmet, her long legs elongated, I just wanted to pick her up and hug her! Finding it all too emotional, not being able to hold her or share any  birthday joy I had a melt down when she was out of sight. I held up a clenched fist at my maker and hurled abuse for making me have to endure such torture with my condition. I screamed from inside in complete desperation: “my faith is on the line, if you don’t help me with this unbearable pain in my time of absolute need, I’ll stop believing”. I pulled myself together so as not to create any drama on Kitty’s special day.

We headed to the activity centre where the birthday girl would meet the entire female population of her class plus other close friends. My lovely friend and carer Nat stayed by my side for the two hours of partying. She’s amazing. So giving and loyal and calm. I really appreciated her presence there as Jonnie was looking after everything else. Something I had dreaded, having felt awkward about meeting Kitty’s classmates and their parents, turned out really well. I believe the grace and calm that I felt was my maker’s doing as a prayer was answered. Others felt it too. I also met some mums from the mother and toddler group that I hadn’t seen for years which made it extra special. I could talk to them with the eye gaze as the lighting conditions were suitable. I met another good friend from college who I’d been out of touch with for over eight years. She knew about my condition but, I suppose, felt a bit inhibited about getting in touch as people do. I noticed a shock in her face when she first saw me.  But  once we got chatting, albeit slow from my end, we reconnected again. Or so I thought. She left without leaving any number or email address. As my Dad used to say at such vacuous moments to make us laugh, “funny, innit”?!

Am really enjoying the build up to Christmas. Bring on twinkling lights and Winter sparkle! Love it!




4 responses »

  1. You must have been writing this as I wrote to you Em! Thank you for such a looonnggg update, it’s lovely to hear from you! Its so inspiring to see your spirit shining through, a bright beacon to us all and a reminder for us to ask for help when we need it….and then to know it when it comes. You are an amazing woman Em, love you dearly & hopefully see you surrounded by twinkly lights and winter sparkle soon! Bisous xx

  2. Hi Star,

    Fabulous read – oozing all kinds of emotions. Being so far away from you ( but not for long ;-)) ) it is so good , though heartbreaking at times , to hear exactly how things are going. The way you write draws me right in & for the duration of my reading I can visualise everything. I also feel the love , strength & support you are surrounded by and my heart melts at the sight of Kitty on her skates! I can only imagine how painful it was for you on her birthday especially having to endure those feelings. This time next week I’ll be there …. Can’t wait to get to your beautiful Christmassy home! xxxxx

  3. Hi Emma, you’re so the best! I love reading your blog. Your writing just flows and I feel like I’m talking to you. I miss you and hope to see you over Christmas in Kinsale.
    lots of love

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