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.
#1 by Gill lodder on October 19, 2022 - 08:38
My heart goes out to you and the devastating changes to the family lives. I wonder how her sister is coming to terms with the loss?
We in France are covering your back.
Grief does not go away it changes.
You do not feel grief unless you love.
#2 by Wild Daffodil on October 19, 2022 - 09:16
❤ Your gorgeous girl. ❤ Sending much love ❤
#3 by Mo on October 19, 2022 - 10:59
For you xxxx
#4 by Lindashee on October 19, 2022 - 11:03
I had no idea as I’m not very good at keeping an eye on blog posts and missed last update but I am subscribed to your newsletter and decided to click on the notification today. I am really sorry for what happened, but glad you now seem to be making a comeback. I can’t imagine it being an easy thing to go through and I hope you find pleasure again in those little things and share those new happy memories with us.
#5 by KB on October 19, 2022 - 11:24
Losing a child is one of the worst things I can imagine. I’m so sorry.
We have a little one with high needs (higher risk of epilepsy, as it happens, although no seizures yet). As we’ve been dealing with his medical and legal needs, I also have had no interest in knitting. I’ve begun sewing because most typical shirts for his age don’t fit him. I’ve only recently gotten back into knitting and thinking about sewing for fun.
All that to say: we need what we need when we need it. And sometimes we need a break. Creative energy is still energy.
Your daughter’s memory will live on in you and those who loved her. And now in us, too.
#6 by M. L. Kappa on October 19, 2022 - 13:04
Oh, no. There are no words. Sending virtual hugs and positive energy. She was gorgeous—glad you posted a photo. She will live on in your minds.
#7 by Patricia Kooistra on October 19, 2022 - 13:11
#8 by Laurie Graves on October 19, 2022 - 13:12
Read this with tears in my eyes. Yes, your gorgeous girl, obviously a cat lover. So very, very sorry for this terrible loss.
#9 by Nice Piece of Work on October 19, 2022 - 13:49
Won’t try and put my emotions into words, but sending you love and courage xxx
#10 by Ann on October 19, 2022 - 14:10
My heart breaks for you, your husband, and Bryony’s sister. Can only begin to imagine the turmoil and sorrow you’ve all had to endure/are enduring. Sending love.
#11 by kathyreeves on October 19, 2022 - 14:13
Thank you, thank you for writing this post, Lynn. The loss of your beautiful girl breaks my heart. You have been on my mind and in my prayers these months; I knew there was terrible grief involved, but now I will pray more specifically for each of you. Sending so much love to you, Mr. Tialys and your eldest daughter. Books can be such a great escape, but glad to hear that a little crafting is beginning to spark. Grief is an individual road…take your time and know you are supported, however long the road is.
#12 by Mary Rickles on October 19, 2022 - 15:05
Sending love and courage to your family
#13 by Tina Long on October 19, 2022 - 15:56
Hi Lynn, Had another cry of course but well done and welcome back to slowly resurfacing. Lovely photo of Bryony. LoveTina xxx
#14 by Anita Konow on October 19, 2022 - 16:12
Sending love to you and your family. My heart breaks for you. My husband has epilepsy and I must say, I have never heard of SUDEP. I am going to start supporting it.
#15 by claire93 on October 19, 2022 - 20:02
as Kathy so rightly put it, grief is an individual road. I was so pleased to read you today, and that you were able to do your little bit to help other people in future, by completing the SUDEP questionnaire.
#16 by Marijana on October 19, 2022 - 21:01
Dear Lynn, I have followed your blog for ten years, and Mlle Tialys the Younger was a frequent guest in that time. I knew something truly devastating had happened by your choice of wording in the last post and I never stopped thinking about you. Thank you for resurfacing and writing this tribute to Bryony. I am so sorry. With love to you, your husband and daughter. Marijana
#17 by carolecal on October 19, 2022 - 21:20
How brave of you to write this post .So very,very sorry for your loss.
#18 by craftycreeky on October 19, 2022 - 22:02
Thank you for writing this post, it must have been so hard to put it into words, I think you’re very brave. I have thought of you often over the last few months, words seem so inadequate but sending much love to you and your family.
#19 by magpiesue on October 19, 2022 - 23:09
I’m wrapping you in a virtual hug. You’ve been in my thoughts and prayers.
#20 by jendavismiller on October 20, 2022 - 00:38
Oh Lynn, I’m so sorry. Sending so much love to you and your family. Come back as slowly as you need to. Been thinking of you lately. ❤
#21 by Alison Cane on October 20, 2022 - 05:15
I have been an email subscriber (from New Zealand) to your blog for several years and have been inspired many times by your words and beautiful creations. I have never commented before (or at least I’ve forgotten if I have done), but I feel moved to comment this time. As a mother and one who understands grief, I stand with you as you put one foot in front of the other and carry on (or stop, as sometimes you will need to do). Know that your wee community of followers love you in all your creative, quirky goodness, and if you just can’t, that’s ok as well (though we would miss you). Sending much love.
#22 by cedar51 on October 20, 2022 - 06:09
I missed you – sending you a virtual hug from New Zealand
#23 by katechiconi on October 20, 2022 - 09:21
I’m sorry to have come to this post so late (the not-much-fun explanation may appear next week). I have wanted very often to reach out to you to see how you were managing, but felt that if you’d wanted to bend an ear, you knew mine was ready and waiting. Perhaps I should have, but it’s hard to know what to do for the best in the face of such devastating sadness. I am so glad to welcome you back to your creative tribe, now that you are ready to join us again. I’ve missed you badly, and always felt so happy to see a Like when the mood struck you. Thank you also for publicising SUDEP; despite coming from a family with both epilepsy and autism spectrum members, I hadn’t heard of this – for which I am profoundly grateful… Big hugs
#24 by marye113 on October 20, 2022 - 11:33
I am so sorry to hear of your loss. Having lost my husband two years ago, I realize there are no words that sufficiently describe what you’re going through. Grief is such a painful, solo process. Please know that my thoughts are with you.
Kind regards, Maryellen
#25 by Carol in Texas on October 20, 2022 - 16:46
It was so good to see your blog entry……I’ve missed your blog but understood you had experienced some terrible event in your life…..and losing a daughter is certainly that. Just know that your thoughts and words are enjoyed by many people, so when you feel like writing, I and I’m sure many others look forward to hearing from you
#26 by Kate on October 20, 2022 - 18:57
Tialys, I am so sorry for your loss.
Sending much love to you and your family xxx
#27 by simplylive1452 on October 21, 2022 - 00:00
Thank you for your brave transparent words. Grief on the loss of a child is at a higher level for sure. Glad you are giving yourself and family the space and time you need. My prayers are with you.
#28 by ceebees1 on October 21, 2022 - 11:23
So very sorry to hear your sad news, thinking of you and your Family…..
Gorgeous photo of your Beautiful Daughter.
Lots of love and virtual hugs.
Sent from my iPad
#29 by nanacathy2 on October 21, 2022 - 12:08
Oh my, I am so very very very sorry and you have my heartfelt deepest sympathy at your loss. The reason for you absence is far worse than my imaginings. Although I have never written about it in my blog I lost baby number three when he was just 11 hours old. The void within yourself is never filled. Gradually you can go an hour then two without wanting to howl the place down. Hugs are coming over the interent for you and your family. Publicising awareness is an amazing way for you to respond. When you are ready, you will be back. What I’d also like to add is that we and you are part of an incredible blogging community which I have found extremely good and supportive. xx
#30 by Stephanie Ewart on October 22, 2022 - 01:33
There are no words for this, but I’m so so sorry for your unimaginable loss.
I’ve always enjoyed reading about your family, such as the shenanigans of sewing for picky teenage girls! But the best of it was that the love that Shinee through everything you wrote.
Nothing will “help”, but I hope you keep finding things that get you through, whether it’s reading, sewing, raising awareness or wine!
#31 by Stephanie Ewart on October 22, 2022 - 01:35
*shone not Shinee
(Shinee is my dog’s name and my phone is obviously used to that!)
#32 by Johanna van der Heul on October 22, 2022 - 14:40
Dear Lynn and family,
I am so sorry to hear about your terrible loss. Heartbreaking story. I send you love and strength.
Hopefully there will be a sparkle of light in your life soon.
#33 by Evie Jones on October 26, 2022 - 17:20
Oh Lynn, I cannot begin to imagine the awfulness of all of this. I have no words of wisdom, but utter admiration for the strength you have shown in working with SUDEP.
Sending all the hugs, continued strength, and the hope that your happy memories of your beloved girl sustain you until the light breaks through.
Keeping you and your family in our prayers,
#34 by The Snail of Happiness on November 15, 2022 - 15:08
I’ve been so busy with the shop in recent months that I haven’t been keeping up with reading (or writing) blog posts, so I’ve only just seen this. Of course there is nothing to be said, except to pass on my sincere condolences. I hope that you are managing to focus on some happy memories and finding ways to enjoy life and I hope your creativity will gradually return too. Much love x
#35 by Born To Organize on November 23, 2022 - 05:28
Lynn, thank you for writing this brave post. I can’t begin to imagine the pain and loss. It’s a parent’s worst nightmare to lose a child, an unimaginable grief you never fully escape. I’m glad you’ve dipped your toe back into blogging. We’re a loving bunch and so happy to see your presence here. As Christmas approaches and the anniversary of your loss, I imagine the emotional wounds will feel raw. My heart goes out to you. Thank you for sharing Bryony’s sweet photo.
#36 by lovelucie1 on January 7, 2023 - 15:18
Dearest Lynn. I’ve just picked up my wordpress account after a couple of dormant months and have been reading past blog posts. I had realised that you had taken a break from your blog for something sudden that had happened to you or your family, but no one would ever guess this.
I can’t imagine it has been an easy Christmas. I remember so fondly of you referring to Miss Tialys the Younger with regards to anticipated visits and makes. Sending you love and hugs. Lucie xx