Judging yourself through your grief

I am so thrilled that Katie and Evee have been so kind enough to write another post for me. I know from all the comments that the last one they penned was so loved. Please checkout their blog (The Grief Reality), it’s such a wonderful source of love, human spirit and hope. You might also come across another post from me there today as well.

I know how tough this post would have been to write for them. I have been feeling similar emotions about my Partner as well. They set these out so beautifully.

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Mum was always so protective of her daughters. If we came home from school crying about being bullied, she’d be straight on the phone to the headteacher even if we begged her to just forget it. She said her fierce protection was something we’d only understand when we became mothers ourselves – perhaps that is true. 

 

However, as time went on and we understood our mum’s growing fragility, we too stepped into a more protective role, that perhaps only children in our position would understand – we don’t know for sure. Eventually, simple things such as birthday parties became hazardous as they opened the risk of Mum becoming neutropenic with her compromised immune system. 

 

We miss our mum every single day and there is so much we have not been able to share with her over the last 18 months. Yet, with the current world events that are unravelling, quietly, we have both admitted to thinking “Thank goodness Mummy isn’t here to see this”. For the pair of us, this thought hasimmediately been silenced by shock, guilt and self-judgement: “I can’t believe I just thought that”. And it took a while for both of us to open up to one another to talk about this guilt. We were afraid to voice this utterly shocking feeling; about someone you physically ache to see again.

 

The fact that we can miss someone so much, but not want them to be here to bear witness to all the wrong in the world, is an unexplainable feeling. When we were early on in our grief, we thought it unthinkable when a counsellor told us we will one day consider that our mum is ‘safe’.

 

Well, we guess we are finally there. Mum cannot be touched or hurt anymore; and she is more protected than we could ever make her. We thank goodness that our mum is safe now and she does not need to worry about delayed chemotherapy treatment due to Corona Virus, or what we’d do if she needs to go into hospital. 

 

It is a conflicting emotion for us as this fear no longer lingersabove us. Yet, we still cry for the families who are living through it. 

 

Underneath everything, we know, no matter how far we come, all we will ever want is a cuddle from our mum, to be told this will all pass, and we will be okay. Isn’t that all anyone ever wants?

 

Go gently, 

 

Katie & Evee

The need for travel

Last night we were watching the new Sonic the Hedgehog movie. Yes we really do like to stretch our cultural boundaries. A couple of times during the movie I found myself thinking – wish I could visit that location. I’ve been doing that quite often recently. Can’t really blame the pesky virus completely for that. I was having those thoughts before the lockdown. Our Son’s world is naturally contracting. So mine is as well. The last time we spent more than one night away from our home was back in 2015. Sporadic day trips and the daily run partially helped fill my mind with some connection to the wider world.

So after Son had gone to bed I went in search of photos. Photos which would remind me of trips and holidays. Soon I was back in Northumberland with my partner. A week in a gypsy cottage.

Walking alongside Hadrians Wall and in the footsteps of Roman soldiers, almost 2000 years ago. Touching and drinking in ancient history.

Enjoying the open spaces. Hardly meeting another soul. Feeling that cold northern wind and walking on the soft moorland. Feeling no limits and letting the map decide the route.

Places like Northumberland have a unique atmosphere. A bleakness. An almost somber beauty.

And then a reminder of why I am so thankful for life.

Random memories

Today’s mobile phone, out of focus, wildlife photo. Another bird flying.

Another night and another bizarre dream. An LP (yes vinyl) was being released and I wanted to make sure I got a copy. So I camped out overnight outside a small record shop. During the increasingly wet and cold night the public telephone (just a few paces away) kept ringing. When I picked it up I could hear my partner at the other end, but she couldn’t hear me. Finally the record store opened and I walked in to find that what was the towns only music shop had been turned into a hairdressers…..

The record store in my dream was one from my past. I lived in a small seaside town which had few record store options. We had a Woolworths which was great for a few compilation records and those bizarre records that had the hit songs on but always performed by not the real artists. We had a Boots the chemist which sold a few records but only those from the likes of Sinatra or Shirley Bassey. Boots never allowed you to return records if they were scratched. Thankfully the town also had a little record store. A small ground floor, with an even more cramped first floor attic. The store was next to the towns Bus Station. Tony’s Records was my Saturday Mecca. I would spend hours pouring over album covers, carefully working out which record to buy.

Got so many memories from Tony’s. That time I bought a Mountain Live double LP. It was reduced due to a few minor scratches. Basically every song was unplayable accept one. Thankfully that one song, Nantucket Sleighride lasted 24 minutes. For those of a certain age in the UK, that song was the theme tune to the Sunday political show – Weekend World. I did get to see Mountain play that song live at my first ever music festival at Knebworth.

I remember Peter Cook and Dudley Moore bringing out the Derek and Clive records. Painfully funny but shocking. That bad you had to be over 18 to buy it. Tony’s wouldn’t sell it to me so I asked my mum. Nine the wiser she strolled into the store. The look my mum must have got when she asked if they had a copy of Ad Nauseum.

I bought my first cd from Tony’s. It was Rory Gallagher. Bizarrely I didn’t actually buy my first CD player for another year. I just couldn’t afford one. I just wanted to have one of those circular works of high magic.

That little shop closed down many years ago, but clearly it’s still going in my dreams

Village life

It’s almost time for these biscuit munchers to move to another field. The cows are massing, waiting to hit the field for the summer months. Hopefully the three cow friends of our dog are still here. Dog is wagging his tail at the sight of the herd in the distance.

That’s country life for you right there. That’s as exciting and as racy as it gets here. It’s such a different life pace than living in the city. It took me a couple of years to adjust. Life never stands still in the city. Constant noise, constant movement. Even at night it never stopped. So much light pollution, sirens wailing, so much human nightlife. Yes immediate access to facilities and entertainment but it comes at a price.

Here we get a chip van that comes once a week. A cycle race comes through maybe every couple of months. Once a year a vintage car rally might stop off. That’s it for the days. With the spaces and high hedgerows you hardly ever see signs of human life. That’s such a good thing somedays…. Son and I have our little challenges with forfeits. Basically it gives Son an opportunity to torture his Dad. I remember one challenge where the loser had to run round the garden ten times – naked. The inevitable happened and I found the whole experience most liberating. In a city that sort of behaviour would have got me quickly arrested. Here in the village all it produced was much chuckling from Son and bemused looks from the cows.

At night no street lighting or light pollution. No pub to foster human nightlife. Wander into your garden and it’s pitch black. The only noise is from the wildlife. I’ve told the story from the first night before. Stood outside looking at the stars. Amazed at how many I could see. Then a deeply unsettling feeling. I am not alone. I am being watched. Suddenly countless eyes appear at the fence. I of course took it in my stride. Screamed and ran. The eyes later revealed to be many sheep clearly waiting for biscuits.

But over the years it’s all changed. Now I find cities claustrophobic and unsettling. I’m not sure I could ever go back to living in one again. Certainly Son would struggle. He enjoys his space and the quiet. City life would be too many people in too little space. Too many sensory distractions. I remember my partner saying that we will never return to urban life. We might end up being in this house for the rest of our lives. She was right, sadly far too quickly right.

Bush and Time

Every year around August I think about either digging this plant out or really cutting it back. But I always decide not to. Basically too much like hard work. So it stays and has slowly taken over a corner of the garden.

And every April I’m so thankful I left it alone as the mass of yellow is just stunning.

So yes some decisions have unintended wonderful consequences. But not all.

Putting off getting married for a few more years so we could focus on Son was done for the right reasons but then time ran out…. Time wasn’t supposed to run out.

Putting off trying for another child …… Time wasn’t supposed to run out.

Putting off going as a family to New Zealand, Canada and Chile ……. Time wasn’t supposed to run out.

Leaving for another month fixing the hand held video camera and transferring those films of our Son’s first steps to video so my partner could properly see them ……… Time wasn’t supposed to run out.

Leaving to next week (and the week after) those really important questions I always wanted to ask my mum …….. Time wasn’t supposed to run out.

I can see a bit of a theme developing here. I’ve probably filled my time with too much unimportant stuff. Spent too much time worrying and overthinking issues – many of those I could actually do nothing about. Not focused on the important stuff. Not appreciated how precious and unpredictable TIME is. I have not seized the moment.

Hopefully I have learnt this lesson but I suspect that won’t apply to chopping down the beautiful bush.

A trip to a castle

I was looking for batteries. Why are batteries so pesky. You spend most of the year cursing who many batteries you find on shelves, pockets and cupboards. But when you actually need them, the little blighters hide. When you do find them you can guarantee that they are the wrong size. Anyway I was looking for batteries with absolutely no success then ….

An old and forgotten box of old photos. It’s times like this that I am so happy that I had a habit of taking too many pics. This box was from a holiday we had way before our son was born. We arranged a last minute week long trip to Northumberland in the North of England. For those who don’t know England that well – find the most northerly English city (Newcastle). The bit above this city and all the way to the Scottish border is Northumberland. It’s a beautiful and often desolate place. With few large towns, rolling hills, moors and some of the countries finest castles.

For the week we rented an old Gypsy Cottage. The weather was so Northumberland like. Very windy, cold and often exceedingly damp. Today’s photographic memory trip was a day trip we had during that lovely week. A trip to Dunstanburgh Castle.

It’s a stunning castle ruins set right on the windswept North Sea coast. To get to it you park up in a small fishing village and walk along the beach. The walk started wet and basically added increasing amounts of water to the mix. The photos brought the memories flooding back. Wow we got wet.

It was a wonderful day. We had the place to ourselves. Hours spent walking along the coast, scrambling over history and even time for sand castle building. Finally we got back to the fishing village and looked round the local fish smoking business. It would have been rude not to sample the produce and chips. Then it was back to the cottage to a roaring fire and an attempt to dry out. Happy Days.

Ever shrinking world

A photograph from our garden. Just five paces from the door. Part of Son’s world.

Our Son really struggles with health related anxieties. I remember the first pamphlet his Doctor handed to us about Aspergers all those years ago – second bullet point – may encounter obsessive fears over health and hygiene. For our Son they were real, life altering fears. Then in quick succession he lost his mum and both grannies. The fears became even more scary and real to him.

In the early party of his Aspergers life he was under the care of a wonderful Clinical Psychologist. She slowly helped but then she retired (and was never replaced due to the decisions backed by many of those in our current Government). His care became a real hotchpotch which achieved very little. Then we were so lucky. Son’s case landed on the desk of a young nurse health counsellor. Since then she has been the only constant through his care. Now because of Government cut backs, she is the only specialist help he gets. Although not an Autism expert she has patiently worked with him and delivered real benefits.

His fears became manageable.

Due to our Governments continued running down of the NHS, her workload has become ridiculous. She just can’t spend the time she needs to with him. But she does what she can. She still cares.

Then 2020 hit. Is it really only 4 months old…….

His fears have gone off the chart. Can you blame him. The worlds gone potty. Everything is up in the air and showing no sign of settling down. Because of the new clinical rules his wonderful health counsellor is not allowed to see him until after the crisis has eased. Being realistic that’s not going to be until the back end of the year at the earliest. So he’s started burning his bridges.

Bridges is a theme I am sure I will come back to over the coming weeks. The world of autism and the big bad world don’t naturally coexist. They are often separate. Links and bridges need to be built. Unfortunately the big bad world is not interested in developing links. It’s been up to our Son to try and build the bridges. That’s allowed him to enter the big bad world. Those links have never been particularly strong. NOW HE HAS BURNED THOSE BRIDGES. The outside world is just too scary and full of dangers. He has bunkered down to his house, his back garden, his world.

The thing is that when things start to improve again. And they eventually will. The big bad world will make no effort to rebuild those bridges again. One lone nurse counsellor will try. I will try. Sadly, I’m not entirely convinced Son will make much of an effort this time. Maybe in the future he will but it will take time. In the meantime his world has shrunk.

Old moon

A couple of full moon photos from last week. My poor old iPhone tries it’s best.

I remember looking up at the moon. I was lying on my back on the cold patio trying to keep still and give the camera phone a chance of trying to focus. Anyway I was looking up at the moon and thinking it was stunning. I really hoped that my partner could be seeing this as well. Maybe she was? Was she seeing it from a different angle? Was she looking up at it from one of her favourite places. Was she above the clouds?

These days I frequently look at things in a different way. For a long time after my partner died I felt bad about looking at beautiful things. Sunsets, landscapes, the Sea, our Son playing. It just wasn’t right that I could and my partner was missing out. She had been cruelly denied this chance. Her time ran out.

But slowly that feeling of guilt started to ebb.

Now when I look at beautiful things, I try to look that little bit harder. Look for just a few moments longer. Truly embrace the moment. Because now I’m looking for the BOTH of us.

Back to the moon. After a few minutes I was becoming distinctly uncomfortable. My back is not designed these days for lying on a cold, hard surfaces. Then a thought. What was I thinking about. My partner was the sensible one. She would be sat inside. Occasionally shouting “that’s very nice Dear”. She would not be outside freezing her butt off. She would be warm inside with a glass of something, watching one of her favourite movies.

That’s a view she would be happy with.

Good Friday ?

The headline in the prime UK gutter newspaper (a publication so bad and so vile I can’t even write its name down) was apparently today

Boris is out – now that really is a Good Friday.

Just those words on the front page….. Yes anyone leaving intensive care in a better state than they arrived is a wonderful little victory but it misses one rather salient point. At least 5000 people died in the UK this week and god knows how many worldwide. Will it be a good Friday for the scores of families who will be bereaved today……. The UK is now recording more deaths than any other European country and because of the shambles the government has made on testing – this probably vastly underestimates the real figure. But no need to report on that….. No need to talk about our wonderful nurses forced into using bin bags as protective uniforms.

What would be a Good Friday would be no one suffering today with only one obituary required – one for that loathsome newspaper. I remember once the newsagent accidentally sent that paper to my mum instead of her normal one. She refused to touch it and she burnt it on the doorstep. Stick that in your pipe and smoke it Murdock.

Let’s move on to the real Good Friday.

Our Good Fridays were slightly odd. Normally my partner would introduce all the family traditions. But not on Good Friday. I can’t remember my partner doing anything different on this day. She was a devout Quaker, maybe that was the reason. I do know that I was her biggest trial in life as we were very very different.

For some reason my family traditions kick into overdrive on Good Friday. So unlike me. What’s the old phrase

You wait hours for a bus and then three arrive at the same time.

  • So each Good Friday we would
    • Not be allowed to drink milk all day (No idea where that one came from, probably one of my random dreams tricked me into that one),
    • First food of the day had to be an unbuttered Hot Cross Bun. Not allowed to use a knife to cut it. Every year I’ve done this an yet I don’t like them. My partner hated them so I had to eat hers as well. Then Son hated them as well so that was THREE buns I had to get through.
    • Can’t eat meat all day.
    • The meal at lunchtime had to be fish.
    • Attend a morning cross parade. These don’t tend to happen here anymore and anyway this year they would be banned.
    • No alcohol before you have had the fish. That was actually a very hard challenge when I was at University.
    • We would fly a kite on the afternoon. Apparently this is a tradition which originates from the Caribbean. No idea why that one reached deepest Yorkshire.

    I have to say this year some of the traditions have been dropped while some are just happening out of our daily routine. No milk or meat so far but that’s because son has not had his lunch yet. I’m tea total these days. Not enough wind for a kite. We might have tuna for lunch if I can convince son to change his food routine. However a pesky hot cross bun (plus the one our son won’t touch) will be waiting for my 2pm meal starter. Unfortunately due to the currents our dog is not allowed to help eat them. Thin king about it I might start a new tradition. Have the smallest bite of the bun then share the rest with the birds. That’s a tradition I might be able to stick to.

    This day

    I’ve been struggling to find anything interesting to photograph today. Then I had a thought. Let’s look back on this day in previous years. So a quick scan was made of my mobile phone photos and this is what I found.

    This was our part of the world one year ago today. Another almost sunny day in Yorkshire. That’s 2 in a year. Wow.

    In 2018 normal service has been resumed. It’s dark and rainy Yorkshire.

    In 2017 it was a friends meet-up.

    Can’t find a photo from 2016 but it would have been a Saturday. A time just months before the world changed for us. Saturday would have seen us get up early and visit my partners mum. After a coffee I would head off and shop for my mum. We would see her on Sunday. We would then stop off at a petting zoo. We would follow the exact same route through the little zoo. Waiting for quiet gaps to appear at each of the animals. Then we headed for home stocked up with sandwiches, cake and ice cream. In 2016 this would most likely have been a nice day.

    So we find ourselves in 2020 and the world has changed for most of us. But just in case we revisit today in a few years time, we had better make it a nice one. So hopefully by the time you read this we will have built a ginormous Lego tower. The picnic in the garden was not disrupted by ants. I remembered to hard boil the eggs before they are decorated for this years Easter Egg tradition. This year we are going for Marvel Super Heroes. We both will have planted some peas (and they haven’t been immediately dug up). I will have found some frozen chips and our Heinz Tomato Ketchup supply can last one more hammering. Disney Plus will have been working and not constantly buffering so we could watch The Hunchback of Notre Dame 2. And that we had many more random laughs along the way.

    While the lockdown is on I might revisit this idea. You never know what I might find and what thoughts it might unleash.