Word of the Week - Stopped

Time just stopped when Stephanie died on the 7th October 2024. Life goes on and since then we've had 2 new grandsons join our family. One in February 6 days after Stephanie's birthday and one born yesterday that we've yet to meet.

We have 4 grandchildren now and they are our world. When the 5 children were small they were hard work, managing their different needs and activities but Stephanie our eldest was always there and part of it, she was the one who bought our family together. The boys just saw her as their sister and didn't question what she could and couldn't do, just accepted her for who she was, but they all grew up, something that she never got to do.

France 2002

Another holiday time and time not spent with Stephanie. I'm not getting caught out by events anymore, but it doesn't mean I'm finding events without Stephanie easier. Occupying my time and brain doesn't fill the space, it just highlights how much space I have for her.

We've had a fun filled few weeks with our adult children and grandchildren with lots of Easter activities, camping, days out and time with friends, but there has been no visit with Stephanie, no Easter eggs bought and delivered, no coffees out with her on our way back and forth, calling in to see her on our travels, no taking her out with me while I've done my shopping for everyone else. Different routes driven as there is no need to go via Gloucester anymore. 

It's not just Stephanie that died, it's part of our lives that have stopped existing. Being the parent of a disabled adult child, is so very different than being a parent to our other adult children. 

All our children left home and live independent lives, including Stephanie. But they have jobs, financial independence, their own homes, partners, children. can make their own decisions, can ask us for advice, talk to their mates, make their own decisions, make their own mistakes, ask for help, ignore us.

They can do anything they want, they can even take themselves to the toilet.

Stephanie left home and moved into supported living, but Stephanie couldn't do any of that. Nothing. Stephanie couldn't speak, feed herself, communicate. Everything Stephanie needed to do, was done for her, other people decided what was in her best interest and every year there were meetings to decide what was in her best interest, she never attended the meetings, it was too disruptive for her, for the meeting.

Her budget, how much, how it was spent, her personal allowance, financial advocate, her staffing levels, her health, her home, her activities, her transport needs, dietary requirements, dentists, meetings for blood tests. Every single thing you do for yourself, every single thing you do for a child, if you can imagine it, it was done for her and every single thing had to be agreed. Not task by task, but yearly, financially and by whom. By us as parents, her carers, social services, health and everyone else who had a financial interest.

It took a lot of our time, not a minute of it was resented, we were grateful of every single bit of support and help we received, but it was time consuming. Phone calls, meetings, emails, forms, assessments, budget cuts, reviews, worry. In between there were problems that needed sorting, staffing issues, safeguarding concerns. 2 years of covid, constant changes of staff, management, ownership of her home, changes of service users, issues with other parents to contend with.

After Stephanie died there was a flurry of activity sorting out her finances, exchanging emails sorting out a few bills, collecting items from her home, a few visits and calls and then nothing. 

It all stopped. Everything has just stopped.

Week 16 2025 One Daily Positive and Project 365 - Happy Easter

3 migraines this week. It's so frustrating. Think the easiest thing to do will be to record when I don't have a migraine or a headache. 

Day 104

Packed the car and drove up tp Much Wenlock to meet Jenny Lothersdalelass. Jenny's son Rob died 3 years ago from a rare form of sarcoma, he was 32. We talk a lot online and we've met before, but unbelievably 13 years ago. We wandered round the Abbey and had lunch, there were tears and we shared our stories. I then camped up a few miles away for the night and spent the late afternoon/early evening reading and writing letters, I had an early night, more meds and watched some TV on my phone.

Day 105

Slept through till 5.30am and dozed on and off, listening to the birds. It had rained but I never heard it. Lazy morning reading and drinking tea. I packed up after breakfast and slowly made my way home stopping at a garden centre and a National Trust site. I had a picnic lunch at Berrington Hall and explored the house and walled garden. I met Peter at the retail park for coffee and to get fuel. Back home I popped the roof to dry it, unpacked the van, restocked the tea and sugar, put in clean towels and a t towel and dish clothes and more waste bags. Had dinner, watered the garden, read, TV and an early night. 

Day 106 

A lazy morning. We had to go to Lydney to collect my football ticket for Friday as Son had ordered it for me but he'd had it sent to his dad's. We stopped at Ross-on-Wye on the way for a Starbucks, then onto a garden centre near by, where I bought a Jasmine Stephanese, then into the Forest of Dean to visit our grandchildren for an hour, bringing our granddaughter home with us for the night. The football ticket hadn't arrived so son rang the club and they transferred it electronically.  The easter bunny had visited so some chocolate was eaten, some colouring in was done and the toys were out. I'd arranged to meet a friend in Malvern for a coffee so granddaughter stayed with Peter to play with the toys and have dinner. There was time for some TV before a bath and reading numerous bedtime stories. She settled around 9pm after telling me 'Granny, I like properly love you'

Day 107 

Granddaughter came into us at 7.30am. We made pancakes, put a packed lunch together and headed off to countrytastic at the Three Counties Show ground for the day. There was coffee, ice creams, a go in the air ambulance, watching a dog trial and lunch was eaten before queuing to ride a unicorn (pony) when DIL and grandson arrived. We then visited the animals in the barns, watched the exotic animal show, planted some seeds to bring home and face painting and I bought some cheese. Back to the house for dinner, lots of cuddles with grandson, more playing. Grandad got soaked being helped to water the garden.

Sadly there was an accident on a local farm while we were at the show and a 14 year old boy lost his life.

Day 108 

Out early for a coffee and a food shop. An hour to make beds and get things ready for son, DIL and grandchildren to come back for the night before I caught the train midday to watch Birmingham play. It rained heavily and I was sat in the open. As with all things football, it can get a bit heated and even I get to learn new swear words every week, however this week a few things were said that I found unacceptable and I left 20 minutes early to find somewhere else to sit. I decided to make a complaint about it and it was taken seriously. Granddaughter and hubby walked to the station to collect me with Olive the Pug, my friends dog, who was dropped off early evening and is staying with us till Tuesday. 9 books had been selected for me to read.

Day 109 

After breakfast we were finally ready around 10.30am, granddaughter insisted on a bath and more pancakes and headed out to Croome Park for the day. Son didn't come with us, he headed into Worcester to buy a suit for a wedding in July. the rest of us had coffee and cakes on arrival. Granddaughter walked Olive all day and the both of them were inseparable, even climbing a tree together. We walked the whole of the grounds, explored the house and joined in with the easter trail collecting a chocolate egg at the end. Home to a roast beef dinner and they all left around 7pm. I had a bath, then sat down to book flight to Australia for August and flights to Belfast for May bank holiday to visit our new grandson due next week.

Day 110 

Woke early with a migraine, stayed in bed dozing till midday. Hung washing out. Into town for a coffee and walked Olive. Did some weeding for half an hour and back to bed and watched Willy Wonka and wrote some letters. Had dinner and did a bit more gardening. Booked accommodation for Australia and Dubai. Dusted bedroom, chucked out dead flowers, blogged, tided away Easter decorations and sorted desk. Bed early to watch TV.

Things to make you smile:

Granddaughter told me I was her favourite. 

Granddaughter needed a wee while we were out, so we went into the trees, I lifted her up, I said 'feet' she replied 'clear' she told me to move mine a little, then she said 'ok granny I'm going to wee now' 

Granddaughter said I read like Mr Thomas did, her teacher. I told her that was because I was a teacher and I showed her a photo of my class of 4-5 year olds from 2015/16 when I taught in Dubai, she was amazed and kept calling me 'Mrs Scott'

Things that made me happy:

Our grandchildren for sleepovers, camping, friends dog coming to stay, getting our flights booked, visits with friends, easter chocolates, football, the weather.

On the blog this week:

Word of the Week - Acceptance

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Word of the Week - Acceptance.

There are a couple of things niggling me at the back of my mind that I'm worrying about at the moment. Things I have no control over, but if they happen then life as I know it will change in a big way. It will be devastating and the impact will be huge with a massive ripple effect. It's not health related, it's to do with people.

I've no control over it. But what I do have control over is how I deal with it. I have to accept that people will behave in bizarre ways and whilst their intentions aren't to hurt others, sometimes hurt is inevitable. 

Acceptance is hard. My father's death in 2017 was hard. I accepted he had died. I just never dealt with the trauma of his death.

I've accepted our daughter died, but again, it was another traumatic death, that I witnessed, that I didn't walk away from. 

I could've left the room on both occasions, but I didn't, I chose to stay put, chose to stay with my father and my daughter as they took their last breaths. I didn't need to for me. I probably didn't need to for them, but something made me stay. I said after watching my father die that I was never going to do it again, but I did and I have to accept that. I chose to stay, however traumatic.

I'm still struggling with both these events. I've been diagnosed with PTSD, I've received targeted therapy, I'm on medication, I've had a mental health plan in place. I've reached the end of the support that is available to me. The help and support I want is not available. The help and support I wanted was in the first few days and weeks. 

There was help and support from some amazing people and I will be forever grateful, but it has taken 6 months for me to accept that the people I thought would help just weren't there, they didn't call, they didn't didn't come round, they didn't put aside their differences, they didn't make us their priority.

It's taken 6 months for me to accept this, to move on from questioning why? What did I do wrong for them not to care about us when we needed them the most? For them not to drop everything for us in our hour of greatest need? 

With acceptance comes peace. For too long I've been focusing on regret. I realise now people come in and out of your life, some for a long time and some for a short while. But it's the quality of the time spent, not the quantity.

I accept it's hard to know what to say to when someone dies. I've been in that situation so many times.

I accept that it's hard to know whether to call in or worry that'll you'll be intruding.

I accept that while you'll thinking about the above, time passes, then you start to feel awkward about the gap left.

I accept that maybe some people will feel triggered and can't cope.

But no matter how hard you are finding the situation, for us, it was harder than you could ever imagine and that knock at the door, that message, that late night phone call, that invite for coffee, that hug and and even those awkward silences meant the world to us and always will.

We accept our circle of friends and people we can turn to has grown smaller but it has also grown stronger.

Week 15 One daily Positive and Project 365

I was really irritated on Tuesday, Peter was unwell and he asked me to cancel his dental appointment. I called in on the way to work at 8am but they didn't open till 8.15am. I rang at 8.20am and 8.40am but both times the phone was engaged. I had to teach at 8.45am, so I rang back at 9.45am. His appointment had been at 9.10am. they told me I had to pay a cancellation fee of £48 before I could reschedule. I said OK, I'd pay and rebook at 4pm. I then got a lecture about missed appointments. I told her I'd tried calling but the phone was engaged and the receptionist was really hostile and antagonistic towards me. I told her again I would pay after work and hung up. After work I called in, asked to make a payment for a missed appointment, then once the bill was settled I asked to speak to the practise manager and made a complaint. I pointed out the 'we have the right to work in a safe environment' sign and informed her about the morning conversation and whilst I appreciate the staff must face argumentative clients, they need to listen before becoming defensive and they could probably save 50% of the abuse they receive.

We had a lovely day on Monday. It was the 6th month anniversary of Stephanie's death. I'd requested the day off work. My mum had given us a 'In Loving memory Rose' which our grandson and I planted together.

Day 97 A lovely last day with son and grandson. Off to the park, Easter treats and some gardening.

Day 98

Back to work, the weather is gorgeous, I don't know the last time I wore a coat. Home to water the garden and I booked my flights to Paris in June to meet my friend for a weekend. A campsite for the weekend and tickets for Countrytastic in Malvern for our granddaughter, grandson and DIL next week.

Day 99

A bit of a hectic day in work, but nothing I couldn't handle. Tutoring in the afternoon, then a food shop and coffee with a friend. I had a glitch with my sign in details and had to get my son to buy my ticket for the next match to Birmingham City, there were about 3 tickets left, I was in a slight panic. I also booked a champagne treat for my friend and I at the Eiffel Tower. Home to water the garden, dinner, a bath and watch some TV.

Day 100 Up early to hang the washing up. I packed all my mugs etc up and took them home ahead of the school holidays. Home from work via GP to make a medication review appointment as requested and collect a prescription (that wasn't ready). I packed my stuff for the weekend away and scheduled some blogging. I also tided up the side of the house. We caught up with some TV and an early night.

Before:

Day 101 Sorted fridge stuff out ready for Peter to pack when he collects me from work later. Last day of term and two weeks off. Peter picked me up and we drove to St Briavels, set up the van, had tea and walked into the village to the local pub for an hour, back just before it got dark, read for a bit and had an early night.

Day 102 A lazy morning and a leisurely breakfast. Collected granddaughter and after some cuddles with baby grandson, we went to Chepstow for the day. A rearranged visit from when I'd been ill. We went to the Castle, had lunch out and a wander around the town. Dropped her home, more cuddles  and son did a BBQ. We headed back to the camp site just before sunset to set up again. An evening spent reading and just chilling out.

Hubbies selfie skills need some work.

Day 103 After breakfast we packed up and back to son and DIL’s for the morning. DIL and I took the children to an Easter party in the village hall in my old neighbourhood and spent some time with my friends. Peter and son came down late afternoon, we said our goodbyes and went our separate ways home. Birmingham lost the cup, Peter watched Man Utd in the car on the way home while I drove. Unpacked, watered garden, washing on, tea and an early night.

Things to make you smile:

Granddaughter wanted a video of her twirling in her dress. We'd both worn our tutus to the Castle. Grandad had started to film us when she stopped and started crying. Apparently it was to be just her and I was to film. She stopped crying instantly and did the most beautiful twirl which I filmed in slow motion, before falling over.

As is typical of a 5 and a half year old (the half has become very important all of a sudden) everything is WHY? now every time she says WHY? I hit play on my phone and now she identifies as Annie Lennox and tells everyone that this is her song. She thinks she's very beautiful.

I can't seem to park the little car. I took this photo to show my colleague that it can be done as the previous day, she'd commented that I was 2 foot from the curb and that was after 3 attempts to park.

Things that made me happy: 
Grandchildren, gardening, camping, school holidays. Birmingham City winning the league.

There's a grandchild waiting to jump out of a gap in the wall.

On the blog this week:
6 months without Stephanie - Losing a child
Days out in the campervan - Winter 2024/2025
Post Comment Love - Link up with any post on any subject this week

Word of the Week - Post

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Word of the Week - Post

No, I haven't been to Kuala Lumpur. This is a post card left over from a trip there in 2023. 

I actually wrote it and sent in in March 2025 from the UK.

But for the person who received it this week in South Africa, it wouldn't have been a surprise for them to think it had taken 18 months to reach them.

If you live in a country where things work, you take it for granted.

In the UK we moan about the cost of postage, the late delivery times, items going astray, deliveries to the wrong address. But if you live in a country like South Africa, it's rare that anything makes it to your door at all, ever.

We lived there for 4 years and as an expat, we relied heavily on the post. From birthday cards for the kids from family to letters from friends and important documents such as replacement passports. It was a nightmare.

Even recorded, signed for, deliveries and DHL (other agents are available) had no guaranteee of making it to your door as the postal system just didn't work, so you had a PO Box address that was expensive and even then, you were lucky if anything, ever at all made it into your PO Box.

On many occasions I'd track parcels and letters sent from the UK right to the sorting office and even receive a slip in the PO Box only to be told 'no we don't have it' I'd show them the slip, the tracking number and they would lie to my face or demand a fictional payment to 'look for it' and at that point you knew it had been stolen or in some cases just thrown away.

Once a parcel from my friend was returned to her house 18 months later, having sat someone in South Africa with no attempt ever being made to have delivered it. Another time a parcel was returned from New Zealand, why it went there, I'll never know.

There were times when empty envelopes arrived with no letter inside, just a torn envelope.

I would have even less success posting items from South Africa, even post cards could take months to arrive in the UK. I'd wait till family and friends visited or Peter was travelling and get them posted in the UK and I'd write my Christmas cards in August and leave them with my mum, when I was over on a visit, to post in December.

After we left South Africa, I posted a birthday card to a friend, I asked at the post office for a certificate of postage, even the woman who sold me the stamp said not to bother as she didn't expect it to get there.

I'm off to Paris in June to see for my friend for a weekend, it's becoming an annual trip. I will write the birthday and Christmas cards and some letters for her to take home with her like I did last year, she will arrive with letter etc like last year also for and from a couple of friends. She is my post mule.

It was her house I sent the post card to, the post card was for a mutual friend. For some reason her postman will deliver the post, the friend it is intended for, for some reason, her postman seems to just bin all her cards and letters.

And then little miracles would happen, a letter would arrive address like this, within 10 days of being posted and you'd wonder just how it made it through.

31 Valley Crescent

Centurion

Africa

Africa is a big place. I'm amazed it arrived at all.