Aneta Safiak
@ansafiak
Mother to a child with Ataxia Telangiectasia. And two other children. Carer. Teacher. And in a different life - published poet. MA in Human Rights. National Leader of Antifa (supposedly). #IVF #Stillbirth In surgical menopause.
Even if you're not into nature, this book by @irishrainforest.bsky.social can be applied to human relations. "The key thing to realise is how deeply everything Is interconnected, and that the mechanism by which that came into being is the endless, still ongoing, process called coevolution."
In today's Irish Independent (by Ali Bracken) Jonatan is talking about his life after the official trial has come to an and. He is now on 'off label use' of this medication. If there is any of you who can support and/or repost 🙏 www.gofundme.com/f/happy-life...
In Nottingham rain. Here I am who I always want to be. Here I allow myself to hope.
Every time we go to England, I keep remembering that we're representing Ireland and everything that this country stands for. Generosity. Gratitude. Genuineness. I'm the Irish mum there and I'm taking it seriously. This taste of Longford will make its way to Nottingham tomorrow.
Good morning. My back is literally on a quest to kill me. If you have a magic wond please wave it for me.
Mango cheesecake. Baking and cooking...because next week's trip to England is way too overwhelming for my head space...so I'm trying to keep my mind occupied... It's so ferociously expensive and I just don't get how the HSE can say: not our circus, not our monkeys ...
I'm not gonna lie... it's about me👇 😉 On other news, J is a bit better. So after 3 nights and days of around the clock minding him and monitoring his breathing... I'm having wine tonight. Exhaustion isn't even close to how I feel...
Do not hurt people. Do not use words without meaning them. Do fool around. Do not make promises that you know you won't keep. Do not treat people like temporary solutions. Do not think it's ok to play someone up because you feel lonely... Be real. Be thoughtful. Be honest.
RiP Mr Armani. Creator of my beloved scent. Like you, it is no longer with me. Just an empty bottle to remind me of people, places, and feelings - it was a part of. I miss those times. I miss smelling like a sophisticated rose in a desert. I miss being asked what I smell of.
Last night's sky. And the wisdom to go with it. Sometimes, all you have to do is ask for help. To get rid of those who wave the friend flag the loudest.
Nothing is grand. No progress. Regress if anything.. Bad fall at school... I just don't know how to do it anymore... Only his spirit is keeping me alive.
Week since we got bad news in Nottingham. Worse neurological assessment for J. His bloods are also very concerning. Little one got sick on the last day in England. I found a lump in my breast. Both my cardsRevolut and AIB were compromised. Small amount of money taken from both. Really done with life
This whole Robin Hood experience has really grown on me. But, Ataxia Telangiectasias is a shitty disease and unfortunately things haven't improved for J. The initial first 2 weeks seemed to have been a fluke rather than progress. I'm turning off DMs now as I need to just breathe.
J, how did you get on with Dr M today. - So, we were talking about Robert Downey Jr coming back to the MCU and he both can't wait... Anything about your performance? -Oh, I didn't ask about that. 🤷♀️ That's J for you. It was 35C, and I'm in a liquid form now. Thanks to all.
A FEW THINGS A-T CAUSES: •telangiectasias •neurodegeneration •immune defects •cancer •radiosensitivity •sterility Please consider supporting Jonatan www.gofundme.com/f/happy-life...
I took care of 7 kids today. 4 of my neighbours' who's struggling a lot lately ... 7 lunches, 7 dinners, 3 meltdowns, one outburst of anger, and one Jonatan 😉who lost his calm at some point. I'm bloody done now. It's a cheap wine from Lidl o'clock.
This guy spent a day in Crumlin Hospital. Tests and reassurance given for now. Was also gifted this fabulous bag of goodies, including lotions and potions from David Beckham and others. Thanks so much to everyone who made this day work. Signed: wrecked mum 😉
Guys... Can I say something? ...in the most quiet way possible... And can you please pretend you've never seen it? Just not to jinx it! It's working... Them sachets are working already! 😭😭😭😭 ❤️❤️❤️
We and the sachets have safely made our way home. It took 3 years and an ocean of people to be in a place where we are now. I'm allowing myself to be cautiously optimistic and very grateful... to so many of you here... who cheered me up all along. And medical science🩷
Them sachets. 3 months supply. The number of ppl involved in this process: 2 DRs who approved&signed, 2 pharmacists - dispatched, 3 research nurses who checked and overseen it... Hard to comprehend how non medical screws made their way to the operating theatres in Ireland.
That's it guys... This is the medication... First dose taken. Second will be administered by me tonight. I will now play the role of general paediatrician, untrained neurologist and a research nurse for 6 months. Please Gods and their mothers...this will be what save his life.
