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Today is SUDEP Action Day – an annual awareness day to shine a light on SUDEP (sudden unexpected death in epilepsy) and other causes of epilepsy-related deaths.
So, hard as I’ve found it to write, it seemed like a good day to explain the reason for my prolonged absence from blogging to those of my readers who don’t know the circumstances and also show my support for the work of SUDEP in the hope it will help somebody else by acknowledging the risks of epilepsy and thus taking informed decisions in managing the condition.
Our youngest daughter – known to some of you as Miss Tialys the Younger – was due to come over last Christmas Eve with her sister to spend Christmas and New Year with us.
Her habit was to phone us every evening around 7 and, when she didn’t phone on the evening of December 23rd I thought it strange as she was excited about Christmas and I expected her to be asking what time we’d arrive to collect her the next day so, when I couldn’t get her to answer the phone, I became so worried I decided to drive over to her flat which is an hour and a half away.
When I arrived and could get no answer by knocking on the door, I let myself in with our spare key and found her collapsed on the floor where she must have been since the morning. I called the paramedics but it was too late. The police came, I gave a statement, they drove me home. She was 26.
The post mortem was inconclusive but, as there were no suspicious circumstances, an interim death certificate was issued so we could go ahead with her cremation. However, they needed to do further investigations on her brain and, after six months, we had an official cause of death which is ‘sudden unexplained death in epilepsy’ also known as SUDEP.
She was on medication after she had a seizure in 2020, while her father and I were still in France (on lockdown) and her sister had taken her to hospital in the UK where they kept her in for almost a week and prescribed the anti seizure meds on her release. So, in a way, the post mortem result was a relief because it was sort of what we anticipated and not something more sinister but also because we take comfort from thinking she wouldn’t have known much about it. However, it’s also a bit surprising because although she was on anti-seizure medication, she wasn’t what I think of as being ‘properly’ epileptic – whatever that is.
She was on the autistic spectrum and I worry that, on certain occasions where she told us she’d felt ‘weird’ or had episodes where she couldn’t speak, these might well have been petit mal seizures rather than the autistic ‘meltdowns’ we put them down to.
None of this speculation changes the fact that she has gone from our lives at the age of 26 and that we are still coming to terms with it and nothing will ever be the same again.
I registered her death with SUDEP Action and filled in their questionnaire to help with their research into this fairly uncommon cause of death and, hopefully, it will help people in the future.
I would like to start blogging again but forgive me if, although I do try to read your blogs, I don’t always feel like commenting and sometimes might just press the ‘like’ button.
The urge to sew/crochet/knit etc. has only fairly recently come back again – strangely those things were of no help at all to me during the darkest days. My only salvation was reading – I read so many books that I’ve lost count – but it was the only way I could escape and, still now, when I wake up in the night or early morning and my thoughts won’t let me rest, I reach for a book.
She hated having her photo taken as she got older but I can’t resist putting one of her on here from when she was little and didn’t care.
Bryony Kate 24th February 1995 – 23rd December 2021
Please don’t feel as if you have to comment – I know it’s difficult to know what to say. A ‘like’ will do and will let me know you’ve read it.
I just wanted to let my regular readers know that I will not be blogging for the foreseeable future.
We have suffered a family tragedy this Christmas and I cannot turn my mind to anything else at present.
I hope to come back to blogging eventually but it is very low on my list of priorities at the moment – I’m sure you will understand my absence.
I’ve been a bit sparing with my posts this year what with one thing and another but, as I sign off for the festivities, I thought I’d try to bring a smile to your face before I go.
Knowing how difficult it is to get a dog into a Christmas costume – believe me I try every year (and cats are even worse) – I had to share this special nativity play with you made by members of a chapel in Swansea, Wales.
Just click on the image below, wait for the video to load, put on full screen and don’t worry, it’s not all in Welsh although the Welsh accent is lovely.
I hope you enjoyed that little bit of fun.
I wish you a very merry Christmas wherever you are and whoever you’re with.
Early yesterday morning, after a full (or almost full) moon, a frost had dusted the fields with icing sugar and caused a white mist. We went for a walk just as the sun was struggling to break through it.
We had the camera ready to photograph some new lambs the farmer has put into the field but they were too far in to get a good picture so we snapped this instead and called it a mistbow although somebody else probably already has or maybe it has some other name. If you know, please enlighten me.
In any case, the mist cleared, we had a beautiful, sunny day and the new garden suddenly seems full of possibilities with the snowdrops finished but daffodils and crocus open, tons of hellebores both white and purple, and a patch of heather pulsating with bees. I’m hoping they are honey bees although it seems a bit early. If they are though and I can track down the owner of the hives, it would be great to be able to buy some of the honey.
I can’t believe it’s already the last day of February. Who would have thought that lockdown would make the time pass faster? Or is that just me?
Some adapt to lockdown situations better than others.
As an advertising campaign said somewhere, some time
‘be more cat’
Organised again by Kate over at Tall Tales From Chiconia, the latest Footsquare Freestyle (F2F) patchwork block exchange kicked off in February with ten participants from different countries and Tracy was the first drawn out of the hat to receive three blocks in her chosen colours from each of the other nine participants.
Tracy picked red, green and brown as her colours using photos of cranberries and a Christmas pudding to help us and, having checked with her that she is hoping to make a Christmas themed quilt, I foraged for those rare pieces of festive fabric that I have in deep stash.
I made this Churn Dash because I wanted to feature the lovely stag and deer image in the centre.
I love this foundation paper pieced banded star design and made quite a few for the participants in last year’s swap. Tracy didn’t join us last year so I decided to make her one as there should always be stars at Christmas.
Despite having a lot on this year, I decided to go ahead and join in the swap again as I think I should be able to manage three blocks a month and I like to keep my ‘patchwork hand’ in. I did say to Kate that I’d have to keep it simple this year but I couldn’t resist this pattern for little fir trees but, as it only makes a 6 inch square, I ended up having to make four of them to make a finished block of 12 inches which is, of course, why it’s called footsquare freestyle. So, in effect, I made six blocks for Tracy rather than three. 🙄
Also, I made lots of stupid mistakes while putting this one together, including the final join.
Still, I’ve moved on to Sue’s blocks now as she is the recipient in March and she has asked for shades of true blue and brown. I’ve made two and will start on the third today so I can get them off to the States sharpish.
I am next to receive blocks after Sue, I am ‘Miss April’ this year and I’ve gone for a dramatic colour palette reminiscent of peacock feathers.
Rather more dramatic than my neutral(ish) palette of last year which resulted in my lovely superking size quilt.
I’ve made one block for myself but will probably use April to get ahead with the blocks for the other participants in case I don’t have time later on in the year – I can always make my own ones up at the end.
My use of an ombré effect green fabric has made the shape of the Churn Dash a little more difficult to focus on but, if you squint your eyes a bit and/or look at it from a distance, you can still make it out and it shows the sort of colour scheme I have in mind.
Of course It was only a matter of a day or so before I turned that panel into a cushion.
I’m gradually replacing all the scatter cushions that came with our big leather sofa as they’ve all got very tatty. I suppose they’ve done well to survive for 14 years really having been the plaything of two children (then teens), numerous puppies, dogs, kittens and cats, T.V. dinners and spilt wine.
The actual base of the sofa is still in good condition. Mr. Tialys is supposed to be re-doing the seat cushions in leather. I have only been waiting about 4 years for this to happen so far.
I salvaged the back of one of the original cushions and used it for the reverse of Lord Nelson.
With his red coat he fits in nicely doesn’t he?
Don’t worry, there will only be one cat. The rest will be done like so –
Still red so he’ll still fit in.
So, two of those done – only another twelve to go and then I can throw all the old ones out, having re-used all the feather inners first of course.
Apparently, I’m told the leather for the seat cushions has now been ordered but, considering I bought the Turkish woven fabric (as shown in the two cushions above) at least 4 years ago and have only made two so far, I suppose I’m in no position to criticise.
Saying not very much again on a Tuesday.
I don’t usually do book reviews, and I’m not going to do one now, reading is such a personal thing and books other people have loved, I’ve not liked at all (The Da Vinci Code anyone?).
However, I’ve just finished this well written debut novel and really enjoyed it.
So, if you fancy a bit of a thriller set in gritty Victorian London against a backdrop of the Great Exhibition of 1851 and the emergence of the Pre-Raphaelite Brotherhood, I’d recommend it.
Today, being the 15th of the month, is the day for showing off what you have done with your scraps. You might remember this pattern I showed you at the end of last month’s Scraphappy post and it has driven me every bit as mad as you might imagine it would.
Having cut hundreds of 1.5 inch squares from scrap fabrics, I proceeded to lay them out in 5 x 5 blocks in the order shown in the pattern, like so.
Having joined the blocks up individually, they must then be joined in rows which was much more interesting once the first row was completed and I could start adding coloured squares. Here’s the first two rows joined together and hung out of the way.
I’m making this as a project for Wednesday afternoons when I sew along with a friend of mine and, for the first time when we’re doing a project together, neither of us has felt tempted to do any alone during the rest of the week. I expect you might not be surprised to hear that.
I am not the most accurate piecer which is why I like to do foundation paper piecing as it enables me to achieve better results. So, trying to join small squares together was never going to be a piece of cake for me. I did try, originally, to place the squares on a grid made from fusible interfacing, fold along the lines and stitch then cut the seams open and iron out as I have done for individual ‘postage stamp’ blocks before but, although it made for more accuracy, it made the fabric stiffer and, worse, took longer to do and I couldn’t face doing another twenty blocks. So, I abandoned that method after the first row.
Almost worse than the piecing is the ironing. Pressing all those tiny, close together seams open means burnt fingers and every time you press one seam, the ones only an inch away from it, risk getting ‘unpressed’ again.
I sometimes wonder why I decide on certain projects in the first place but what’s a (sewing) life without a bit of a challenge?
Now, I’ve done three rows and joined them up and can start to see the sewing machine shape emerge, I feel more encouraged. Also, hung in my workroom window, there’s a nice stained glass effect going on.
Mr. Tialys says it looks like a cow. Ridiculous! Who ever saw a multi-coloured cow? Whereas there are plenty of multi-coloured sewing machines around of course 🙄
As it is the 15th of the month, and it’s June, it is also my birthday so I hope to be wining, dining, walking around admiring the scenery and generally enjoying a bit of a break over the border in Spain as you read this.
Just about here….
Hasta la vista, until next time.
If you like the idea of using your scraps (of anything, not just fabric) click on Kate or Gun(first two names in the list below) and join us on the 15th of every month – or just those months you feel like joining in. Here’s a list of both frequent and occasional Scraphappiers (?) if you want to see what everybody else is doing.
Kate, Gun, Titti, Heléne, Eva, Sue, Nanette, Lynn , Lynda,
Birthe, Turid, Susan, Cathy, Debbierose, Tracy, Jill, Claire, Jan, Karen,
Moira, Sandra, Linda, Chris, Nancy, Alys, Kerry, Claire, Jean, Johanna,
Joanne, Jon, Hayley, Dawn, Gwen, Connie, Bekki, Pauline and Sue L.
Earlier this week Wild Daffodil posted about some brown and purple iris in her garden and said they were ugly and looked like witchy flowers – even posing some in a cauldron. I said I had some a little like those and some fully brown ones and she said yuk – or something similar – so I said I’d show her a photo (or two).
So, in defence of oddly coloured Iris varieties, I present
If I ever change my mind though, I have the cauldron ready.