Which mountain?

It’s just over 2 years since we lost her. It doesn’t feel like 2 years. It still just seems like last month..

This photograph was taken on our last family holiday. It’s the view from the hotel. The view brings back so many happy memories. But it’s a sobering thought that the next time I see this view for real it will be on a trip to scatter her ashes. That wasn’t in the script…..

I feel a bit like Dr Strange in the last Avengers movie. Scanning all the possible life outcomes and probably only seeing one which involved ashes within such a short time span. Unfortunately that one came to fruition.

On that last holiday we spoke briefly about if something happened where she wanted to be laid to rest. I never paid too much attention to it. Surely that life option isn’t going to happen for many years – I would make a really crap Dr Strange. But now we have a bit of a problem. Can I remember the preferred sites. Two in the UK are reasonably simple and straightforward. The two in Switzerland ……

One is easy as it’s an instantly recognisable location, we have been to it several times before. The other location is a tad more problematic. She wanted to be scattered at the same location as her beloved Dad. It’s at the top of a mountain I have never been to. Assuming I have remembered the right mountain, Switzerland are not short of one or two. Then I can vaguely remember the instructions. Get the cable car to the top. Start the path down and it’s next to a bench near a small pile of stones. Unfortunately looking at the internet the mountain has at least 8 paths and I’ve counted at least 20 benches. As our son helpfully points out – you will know if you have picked the wrong mountain or wrong bench when that bolt of lightning strikes. No pressure then….

Two years ago this genuinely caused me huge anxiety and anguish. Now I can see the funny side. That’s progress.

Important note. Trying to arrange taking ashes abroad from the U.K. is a nightmare especially if you are planning to fly. You need to arrange a specific flight time with the airline. Then get the undertaker to securely package the ashes and complete the required cover note which has to include the flight details. The airlines I spoke to made the process so difficult. Also straight after the cremation the last thing you want to sort out is air flights. Fortunately the Eurostar train option is so much friendly. They told us to get the ashes securely packaged. Then book as normal when you are ready – just pre warn security when they check your bags. It’s another train journey for my partner then – she loved trains.

When dreams fade

The pre Valentine onslaught is in full swing. One advert claiming to have the perfect gift for my partner, every base covered….. Really – every base?

I’ve always been a daydreamer. As a child dreams of football, cricket, astronauts and mountains dominated. They gave hope. The years went by and still I dreamed. Dreams of happiness and a successful career. Then I met my partner and the dreams changed. Suddenly dreams focused on starting a family. Then our son was born and dreams shifted to happy family life. Few years further passed and it became more likely no more children would arrive – again my dreams shifted. Now they were dominated by images of us happily growing old together. Walking hand in hand. Sat together in Parisian cafes. Sharing new experiences in new lands. Dreams and hopes intertwined. Then the world suddenly changed….

Now I live in the moment, just focused on the practicalities of the day. When I daydream now (very rare) these are entirely focused on our son. Dreams involving me have gone. When I look – nothing. They died with my partner. No happy thoughts of growing older. Just the deepest blackness. I have heard this phrase used before. Living our lives through our children. It is so true. One role.

One day I do hope my daydreams return. Some things don’t change. I am still a daydreamer at heart.

What works

Anxiety, sadness and fear. Three words which unfortunately are too often near the top of our household vocabulary. Along with fart, burnt food, turn the music UP, where’s the remote, sorry I forgot and Dad you Muppet.So what have we found that actually works for both of us. Here are some of the winners.

5,4,3,2,1

We have found that this technique is really good at taking the edge off panic attacks. It doesn’t work on any underlying problems but buys some time. At the first sign of increased anxiety:

Think of 5 things you can currently see,

Think of 4 things you can currently hear,

Think of 3 things you can currently touch,

Think of 2 things you can currently smell,

Now do 1 large breath.

The Sweetie Jar Oracle

If our son is going through a period viewing the world through unhappy filters we start the Sweetie Jar Oracle. Find a large clear jar and a bag of brightly coloured sweets. Not sure about the rest of the world but in the U.K. smarties, fruit pastilles or Skittles work well. Sort out say the red and yellow sweets. Then identify one of the colours as good and the other as bad. Then over a period of a few days, maybe a week start to fill the jar with the appropriate coloured sweet every time a good or bad thing happens. After a few days hopefully you will see more good sweets than bad sweets. This usually convinces our son that although bad things do happen, good stuff happens more frequently. You can then eat the sweets….

Good Memories Store

We have an old small suitcase which we use to store good memories in. It’s full of old photos and handwritten notes. Every time we remember a good memory I write it down and put in in the suitcase. When times are bad we can then dig out the memory store and hopefully receive an instant boost to the soul. Has the added advantage of making sure you don’t forget those all important wonderful moments in time.

YouTube

Just losing himself in a YouTube documentary works somedays. I remember one occasion when he had an awful day at school but after 45 minutes of YouTube watching he was a happy little bunny. Worryingly he had found solace in documentaries about Caligula. What happened to Peppa Pig…

Wheelbarrow Train of Pain

Talked about this in a previous post. It stops my sudden urge to punch the wall with frustration. Basically load up a wheelbarrow with heavy stuff then push it round the garden. The number of circuits depends on the severity of the frustration.

Lego

Found that building a Lego set really helps take our son’s mind off his anxieties. It’s also good for his fine motor skills. It’s often frustrating for me as it just reminds me that I never got round to buying the Star Wars Death Star Lego set. Now it would be cheaper to buy a real Ghostbusters Proton Pack and get Bill Murray to personally deliver it to us.

Trampoline

Almost everyday on his return from school our son heads for his trampoline. 20 minutes later many of the frustrations of the day are put to the back of his mind.

Late night dog walking

Walking the dog never really helped our son. He was often too concerned about bumping into others. We would be having a happy conversation but suddenly someone would appear on his radar and he would be lost to anxious social thoughts. Almost by chance we then found the delights of night time dog walking. At night no one is about in our village. We have the fields and lanes to ourselves. Now it has become an excellent stress reliever. We frequently use the walks to plan out in detail the next days schedule.

Bad things league table

Every so often we run the bad things league table. We both list all the things worrying us. We then work together to rank them in order of how much pain they are causing us. Points are awarded for the severity of the issue, it’s frequency and how difficult it is to solve. It quickly identifies the stuff we need to focus on or prepare for. Because it’s done as a league table our son finds it easy to talk about and work with. For the issue which is the league winner we then spend a few minutes working out a couple of actions which might help knock it off its top spot for the next league table.

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One of the activists 100% guaranteed to raise our spirits will feature in the next post…

Sunday’s, Sunday’s

Sunday’s are a time for reflection. For our son he is not at school but constantly worrying about going back the next day. Constant mood swings. It’s a transition day.

Dealing with death. That’s 5 deaths in 4 years. Again trying to comfort a heartbroken son. A quieter much less fun house. Transitioning to another period of darkness – again. Death is awful and is so so difficult for kids to handle. This grieving process is especially difficult for autistic children.

Trying to refocus for the week ahead yet still so tired from the past week. So many tasks to finish yet so many more tasks to plan.

Son having a couple of hours extra in bed. Hopefully shutting the pain out for a while longer. No laughter, no talking, no warmth. Trying to think about the coming week yet realising the house feels so empty – again.

Hopes for more social interaction yet still strangled by the isolation of the preceding week. Day after day, no phone calls, no chance meetings, no…… I am so so grateful for my friends reading this, you literally are my only connection.

Trying to plan for the educational week ahead yet so frustrated with the constant battles with school. Yes progress but why does it have to be such a tiring fight.

Trying to plan ways to make our son happy yet so broken inside.

I think that’s why Sunday morning is always the time that the icy grasp of sadness is strongest. Especially this Sunday. Ice cold thoughts echo round the confines of our home. Self doubt takes hold. I have never been able to break this cycle. I certainly won’t break it today. Probably never will.

Safety Net

Photo taken from the top of The Niesen.

I never really thought about my own mortality. Before I met my partner my attitude to risk was “it will be alright and if something happens to me I’m not too great a loss to society”. After we became a family I started to become more responsible but I still had a reasonable risk threshold. If something happened to me our son would still have his mum and his granny.

This all changed when I lost my mum and then partner within 6 weeks of each other.

The first few days after my partner left us are still a blur. But I remember one incident like it was yesterday. It was my son’s first day back at school and I was driving to register the death. Suddenly a sports car pulled out in front of me. A suicidal overtaking manoeuvre. Luckily I saw him and managed to swerve onto the grass verge and miss him – just. At that speed it would probably have been game over. All I could think about was our Son. One second slower reaction time and he would have been parentless. The whole incident shocked me. Suddenly there was no backstop for our son. No cover if I couldn’t be there for him.

A couple of years later and it’s a new life. With new dreams, new hopes and new feelings. All the climbing and contact sports have been permanently ditched. No more drinking. No more stupid risks to my body. I just can’t take those chances anymore. I’m even more boring than I once was but much more importantly I feel that I am a much better parent now. Yes the world has changed. But hopefully I have adapted to it. The reality of parenting without a safety net…..

Changes is good just not that early

Today started off in the usual manner. Early morning exercise session listening to rock on the radio. Things going fine apart from the usual creaking body. Put me down for the a full body transplant, I’ve used this one up.

Then things started to change.

I hate doing the plank but apparently it’s good for me. This morning it became even more a form of modern day torture. Two cats decided to sit on my arched back while a dog attempted to lick my face off. Apparently this was one of the Spanish Inquisitions favourite tortures. But I survived.

Then almost immediately the radio signal disappeared. The sound of silence. So I quickly grabbed the first cd I could find. Black Sabbath Vol 4 and tried to complete the session.

Vol 4 is a fine album and features a rarity for Sabbath, a slow reflective song. CHANGES. This song finished off my exercises for the day. Normally at the end of a routine it’s an immediate mad sprint for the warmth of the shower. But not today. I just sat on the cold floor. Lost in thoughts.

A line from Changes had shaken me.

And I can still hear her last goodbyes

I can’t. As hard as I try I can’t remember hearing my partners last goodbye to me – blank. I can vividly remember her peacefully sleeping at the hospice as if it was yesterday. I can remember talking to her gently and holding her hand but as hard as I try I can’t remember her last goodbye. I can remember driving her to the hospital with our son but the conversations are gone. Why would I remember them at the time as she was only going in for a couple of tests and would be out by the weekend. I just can’t remember that last goodbye. That haunts me. Probably will always haunt me.

Blessed

A couple of days ago we had a sad face type of day. Old photographs bringing back memories. Sad memories. But it doesn’t have to be like that all the time. Especially when the photograph entails Switzerland.

Today I feel able to correct this….

Switzerland is such a special place. My beloved partner loved it. So did her parents. From childhood she would spend such happy holidays in the Bernese Oberland. The stunning higher part of the Bern canton. Staying in Spiez a beautiful small town on the banks of Lake Thun. Awesome views to the Alps. The summit of the Eiger is visible in the distance and always the last peak to be illuminated by the setting sun. Early mornings would bring on equally stunning landscapes. My partner would sit and just soak up this view. Today this image reminds me of how special Switzerland is and how blessed I was to spend time with my partner. So blessed. Bring on SMILING FACE. 😊

Sad Face

Working from home does have so many advantages. Fundamentally it gives me the scope to flex work around our son. The days of my career coming first have long since gone. Trust me the career first option is the wrong choice.

But home working is not without issue. The biggest one I find is the isolation. I just don’t meet people face to face anymore. This week I have had only one face to face conversation with someone not in our little family group. That’s why blogging is such a blessing for me.

Isolation. It’s bizarre that like our son I often dream of shutting out this strange world on our own deserted island. Yet isolation in ones own house doesn’t tick the same boxes. It frequently draws you into prolonged periods of sadness. Without our son in the house, it seems so empty, so many echoes of the past.

Today my thoughts kept drifting back to holidays with my partner. One image on repeat loop. An image which is on my screensaver. Sorry it’s Switzerland again. I always seem to be blogging about that beautiful country. It was just so special to my partner. The view is looking across the edge of Lake Thun to Spiez Castle (Schloss) with beneath it the hotel we stayed at adjacent to the water. Many days this photograph brings so many happy memories. However today I just keep thinking that I won’t be able to share this view again with my partner. Sad face 😔.

Resolutions

We started a tradition after his mum passed away that every New Years Day we would drive the 90 minutes to the Yorkshire Wildlife Park. It’s a fun day. Perfect for our son. Maybe this kinda qualifies as a resolution.

I honestly can’t remember what my 2018 New Year Resolution was. Must have been a good one.

On our dog walk today, strangely a rather blue sky one, our son without prompting announced:

“I’ve got two resolutions this coming year. The first one is to learn to read. The second is to move from bottom set, to the second bottom set.”

It is so frustrating that someone so clearly special is just hoping to get out of the bottom set into the next bottom set. I suspect all the parents of kids in the bottom set will be saying the same thing. But it does just seems to add further fuel to the idea of pulling him from school and looking at other options. How can I afford it. How can I not afford it. It’s so difficult. So confusing.

The mad dog brings us back to the present. Why does he have to eat whatever he can find at the same time that he poops. It’s a bit of a talent. Today’s poop snack was the foulest looking leaf. Talking about foul food so we come to the Jelly Bean Challenge. Today’s question was how many Roman Emperors reigned. I realised this may not be a level playing field when our son asked

“Are we only counting Emperors and Co-Regents from the unified empire”

Eh!!!

Before you get the West and East Empire split, often Emperors did not recognise the other Emperor”

Eh Yes Absolutely. I have given this much thought and gone for 500.

“That’s a silly answer”

Ok I will go for 1000

“Even sillier”

Ok 150

“The answer is 70 or 71”

So today I enjoyed Rotten Egg flavour Jelly Bean. This was the first one which sent me edging towards the toilet. I can’t remember this being in the Parent Job Description!!! Anyway tomorrows challenge is a zoo related one. The winner will be the first person to spot a Painted Dog.

I hope everyone has a really good 2019 and all tears are hopefully banished.