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Voice

It’s been one of those Yorkshire days. Long periods of rain punctuated with spells of stair rod duck weather. It’s the perfect weather for a leaking back door. If we had ducks then they would be happily swimming about in the utility room. I know what the rich must feel like now – an indoor pool. Looking at ours I really don’t see what all the fuss is about.

It’s was similar weather three years ago when I had to go and see the solicitor about my partners will. I was in such a daze that I hadn’t realised that I had forgot to put a coat on when I got out of the car. Within minutes I was a drowned rat but I only realised when I saw my disheveled reflection in a shop window. Previously I would have had an angelic voice quietly whisper – why don’t you put a coat on dear. It’s the one thing I have never adjusted to. Not having that caring soul help guide this bumbling fool through the twist and turns of life. That’s probably why I still tend to avoid social gatherings. Not sure I trust myself.

I’m so blessed to have been with that caring soul for a wonderful 17 years. It’s created so many memories. Fortunately years of over using the camera has created multiple photo albums filled with these memories. Those photographs tell our story perfectly. But one thing is missing and it’s so haunting. I just can’t seem to remember her voice. After all those years we spent together how can I forget something so important. I just can’t get it right in my memories.

So I have been trying to find a video with my partner talking. So many videos taken but they all focus on our son. Then I came across our old video camera. The one we bought during the pregnancy. The one which has been gathering dust since mobile phones became the memory recorder of choice. No luck so far but I did come across something which completely floored me. A mini video disc marked up as sons first walk.

When it happened I had picked our son up from nursery. My partner was still at work. Son was sat on the floor singing away so I started filming him. Within seconds he managed to pull himself up and waddled across to me. All captured on film. Unfortunately our dvd was broken at the time so we couldn’t replay it. So I said I would go into the city and get it transferred to video. I kept putting it off. I never got round to it. Over time the disc was forgotten about. I never did share that moment with my partner.

You assume you have all the time in the world but in reality you never know how much sand is left in the egg timer.

It so important that we remember to seize the day. Don’t assume you will get another chance tomorrow.

So the voice hunt will continue. I know somewhere I will find it. Then my memories will be complete. And again I will hear my angelic angel.

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Autumn

Autumn is upon us. Everywhere you look the signs are clear.

The hedgerows are brimming with fruit. Intricate cobwebs everywhere.

Most of the swallows have now departed starting their six week trek to Africa.

Yellows, browns and reds are starting to dominate the foliage. Trees letting go as sad leaves fall to the ground. Soon the fruit in the hedgerows will be gone.

It was the time of year my partner loved the best. She loved the colours and the reflective atmosphere. A time she could walk quietly and just think. Now I walk the same paths. Today I was struck by one thought. My partner would have been looking at these same autumnal sights. Countless generations will have been looking at these sights. As much as you think the world has stopped because of your personal tragedy it never does. Life continues. The never ending cycle of life. The empty branches show the fleeting nature of life. Leaves fall but they will be reborn again. So should you – in your own time. When the time is right – it’s time to live again. It’s time to find a new way of blooming.

For me I’m still in the existing stage. I don’t tend to have personal dreams anymore. For years we had shared dreams. When my partner left us those dreams died. Now my dreams are my sons dreams. I exist because of my son. I live life through my son.

At some stage I will transition into the next stage. When I start to live for me. When I start to dream again. It’s strange how Autumn which is a time of life coming to the end of its cycle has sparked these thoughts. But maybe a better way to look at Autumn is that it’s a time of letting go before you start again. Rebirth. Yes that works better for me. It’s a time just before you live again.

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The tree of hope

Three years ago I was trying to get my head round organising my partners funeral. At the same time I was trying to empty my mums house and wrap up her loose ends. My head was completely spinning. I was in full zombie grief mode.

One family personal trauma doesn’t stop the world from spinning. It carries on regardless. So I was immediately faced with continuing the application for our sons Education Health Care Plan. Sat bewildered at my partners desk trying to find on my own the words for the final application form. The words came so easy when it was two minds. Now the one failed me. Then the black pen stopped working. Couldn’t find another and the form had to be completed in black on the pain of ……

So I set off to the shops to buy a pen. But quickly I was lost in a sea of grief and unanswered questions. An hour later I found myself at a random garden centre. Clearly a good choice for stocking up on pens. I wandered around aimlessly looking at plant after plant. The cctv must have been focusing on me as I was clearly not acting like your ordinary shopper. Then I came across a sad looking tree. Actually more like a snapped twig. The label said ‘discounted Pear Tree due to damage’. I felt sorry for this broken life form pushed to a dark corner of the store. Now no more that an afterthought. It felt like me.

So I went in looking for pens and came out with Groot (Marvel Universe).

Over the next three years Groot has grown and is now about 5 feet tall. Looks surprisingly healthy. AND this year for the first time it’s produced pears. Just FOUR pears. But it’s not the fruit crop which is important here. It’s something completely different. It’s HOPE. When personal tragedy strikes your whole world is turned upside down. It will never be the same again. You move from creating memories together to replaying memories in isolation. But you can’t live your life in those memories. Life has to go on. In my case life did go on. Yes I miss her dearly. Yes sadness always feels just round the corner. Yes I’ve become increasingly isolated from society. But life has gone on. Sons Education Health Care Plan was approved. I’ve changed careers. Progress has been made with Dyslexia. The house no longer feels like a funeral parlour largely down to the addition of a barking mad dog. I’ve increased the range of foods I can destroy. And Groot is thriving. That gives me hope.

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Dark Day

“Death ends a life not a relationship” – Mitch Albom

“If there ever comes a day where we can’t be together, keep me in your heart. I will stay there forever.” – A A Milne

It’s been a dark day for many people today. A dark day here. No more words today let some photographs say the rest.

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Distraction

We are fast approaching the anniversary of losing our Son’s mum and my soulmate. Over the next 3 years we have managed to turn things like birthdays and holidays into celebrations. Yes some tears but more smiles. However this is the one anniversary which remains persistently grim. We’ve tried cards, flowers, local trips to her favourite places, eating her favourite food, looking at photos, letting off a balloon with a message on. Nothing has worked for us in shifting a day of tears and loss into one of celebratory hope.

Call me cynical but I guessed that the anniversary would also coincide with a car crash of a school return. Sadly right. So let’s try something else. A big distraction. Take our minds off the anniversary. So this year we tried to find something like a really loud concert or something similar to do on the dreaded day. But no luck – we couldn’t find anything on the day. We found something on the day before but we just couldn’t afford it. A similar story on other adjacent days…..

So the next best option is tonight. Yes it’s not perfect timing (bit early) but it’s the closest thing to the day that we can afford. The crowd might prove a problem with our son but he wants to give it a go. Fingers crossed that it works out for our son and it gives us a bit of distraction to that rapidly approaching day.

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Feel it

Autumn is coming I can feel it.

That anniversary is coming I can feel it.

Coming up to three years on the grief train.

The world flies past the window with no slowing down.

Unclear where I am heading or the purpose of the journey .

Captive Passenger on this locomotive with absolutely no sign of a conductor.

Who would have thought that after 3 years I would still feel so completely confused . Don’t get me wrong I am so lucky. I have a purpose to focus on. Give son the best childhood he can possibly have under the circumstances. Be there for him when he needs me for as long as that may be. My life is completely focused on our son.

And yet.

I realise that as son becomes increasingly independent (that has to be the goal) then I will need to start finding my own life again. My own self purpose. Will need the pesky grief train to stop at a new destination. But here is the conundrum. I’m driving the train, I’m the passenger, I’m the conductor. It’s down to me. I have to want that new destination to arrive and then I need to open the train door – and then decide to leave the train.

I’m using up valuable air. I owe it to the world to start living again. Eventually.

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Brief

For just a few minutes the clouds parted and summer made a brief appearance. Back to rain now. It was nice while it lasted.

I woke up this morning and like most mornings – half asleep. Few minutes later I’m peddling away on the exercise bike. Starting to feel more awake now. 28kph – come on lazy pants bit quicker.

Dad your squeaking.

And with that his bedroom door shuts. (Most unusual) I most be squeaky. So my morning mini Tour De France is interrupted. Why is it that when you need something from the toolbox it somehow develops cloaking technology. The oil was in the box. Search abandoned and cooking oil is smeared over the noisy bike. I wonder if this is common practice in professional cycling circles.

So we start the cycling again.

Dad can you hear the strange noises outside.

The resulting investigation seems to indicate the side gate banging in the wind. Quickly fixed with a brick. It’s tough for our son. So easily unsettled.

Can you move the bike into my room.

Tell you what why don’t you bring your blanket and try to sleep on the sofa next to the bike. The dog will happily join you. Few minutes later he is settled in with his four legged hot water bottle. So I try to start cycling again.

For a few brief moments I get into the zone. Good speed. Then the mind starts to wander. The biggest problem with indoor cycling. It was an August Sunday three years ago at about this time when the phone rang. It was the Doctor saying sorry but the last treatment option had failed and it was now time to move partner into end of life care. Shiver down the spine. Feel completely sick. Tears starting. Then anger. Why. Tell me why.

Anger fuelled peddling. Speed is now becoming breakneck.

Dad your squeaking again.

And with that it’s time to get off the bike. Squeaking wins the day. Come on son let’s have an unhealthy breakfast.

Can I have waffles.

You can have anything you want son. So like the sunshine. Today’s exercise was brief and my healthy eating regime is broken. Too brief to make a difference.

Posted on by bereavedandbeingasingleparent · 94 Comments

Me Me Me

Blue skies have been a rarity over the last couple of weeks. Strangely this photo is a few weeks old. Can’t remember the last time I had to water the tomato plants. If anything it’s more about trying to stop them drowning in the rain water. The mad dog is currently sat looking out through the back door. Yet when I open it for him he just continues to sit and seems to shrug – if you think I’m going out in that you have another thing coming. Other areas of the county have seen bridges swept away and a Dam almost breached. Wasn’t it only a few weeks ago I was talking about Yorkshire and temperatures in the 90s. Strange old summer.

We have largely been cut off from the outside world this holiday. The occasional and extremely brief trip to the shop but son has stayed in the car. Trip to a castle but at a time (and with the poor weather) that it would be largely empty. We are thinking about a trip to another castle, a zoo and hill walk – but these will be scheduled at the quietest times possible. This is how our son likes it.

But it does have a downside. Next month son will return to school. Small site with over 800 kids and adults. Its just not a natural environment for someone with Aspergers. It doesn’t help that within a few days of school opening it’s the anniversary of his mums death. It not easy for anyone but no kid should have to go through that.

Soon we will need to start the process of getting him as ready as possible for that dreaded return. We will have a few visits to the school. A word with the caretaker will allow a walk round the empty corridors. But that just won’t prepare him for so much noise, so many faces. So we are going to have to visit a few busy places. A couple of trips to a Supermarket. Maybe a visit to a popular museum – York’s Train Museum. It’s a balancing act trying to acclimatise yet not trying to unnecessarily spook him.

The other part to this is ME. It’s about trying to get ME used to people again. It really doesn’t come naturally to ME. Just look at that it’s all ME ME ME with me. I blame it on the rain.

Current mood – Dampish….

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Patience needed

Again a bit of a shout out to the Yorkshire Wildlife. News of my oh so slow mobile phone camera focusing system has got out. Another kindly soul hung upside down long enough for a focus of sorts. Thank you.

As son was happily perched in front of the TV watching a Pokemon movie I took the opportunity to take the pup for a walk. Hence the photo above. It was a short walk, no more than 15 minutes. When I got back home son was not there. Clearly he had gone looking for me. Before I could get out of the door he returned. He has gone looking for me in his bare feet. That indicates the level of the panic attack.

That’s why the school holidays will be based around me and my shadow – or better the other way round. He lets me into his world and that is the coolest thing ever. Now brief solitary dog walks are out then its unlikely we will be separated over the next 6 weeks. I suspect many parents will experience a similar feeling.

Opinions differ on the future. One of his Paediatricians said

“He will eventually grow out of this clinginess. In a few years you will have to face getting your life back on track”

However one of the best clinician I have come across (unusually a caring expert in autism) argued

“He may learn to have a level of independence. However I think the balance of probability is not heading in that direction currently. You should prepare for a life long parenting commitment.” – that was when we had two Parents and two Grannies (now it’s just me)

For me this raises 3 fundamental issues

  • What’s the Plan B if something or when something does happen to me. It’s not a straight forward problem as my brother and sisters are at least 10 years older than me. Practical options are a tad limited.
  • As he gets older the minimal support he gets from the state will disappear. Sadly that’s just how it is. It is not viewed as a priority. Let’s face it – clearly it’s not as important as something like funding tax breaks for the rich. REALLY. As a society we should be better than this.
  • Everyone is different and I have come across examples of wonderful individuals on the spectrum who are successfully keeping down full time jobs. But the evidence suggests that a fundamental problem all too frequently exists. Many on the spectrum struggle to keep down full time jobs. I have seen stats which indicate the Autism unemployment rate can be as high as 85%. Some will be fully dependent on full time help for life. Those parents are unbelievable heroes. I am in complete awe of you and the daily sacrifices you make. I have read a number of Aspergers stories recently of people who have developed levels of independence and who have tried to work. The message was hauntingly similar. Countless jobs started well but they started to struggle with time keeping, office politics, social interactions and multitasking. Office small talk was alien to them and they became isolated. Eventually they became ostracised or the butt of colleague jokes. Employers seemed oblivious to the issues surrounding autism in the workplace. Anxiety and Depression kicked in, sick days started then the job was gone. Cast adrift again in the alien world without any support.

Every person is different. Things can work out well but they can clearly also go badly. I need to get my head around this and start preparations now. This could be a lifetime project. Which brings me to one last thought. Last week someone said to me

“Your still relatively young. It’s such a waste. You just need to get through the next few years then he will have his own life and you can start living yours again.”

Currently that outcome is not part of my plans. Years ago I had personal dreams but now they are gone. They went with my partner. I’m here now to do a wonderful rewarding job and I will give that my best shot. In the end that’s what any decent parent would do.

  • Posted on by bereavedandbeingasingleparent · 54 Comments

    Pranked again

    Absolutely shattered. Tank empty, operating on fumes. Sleep walking. Zonked out. Giving Zombies a bad name. Too tired to sleep. Insomnia. Whatever you call it, it’s not a good place to be. Too many of us suffer from this. So much for progress.

    Last night was a decent one really in the scheme of things. Three hours sleep. But just not enough. You know it’s going to be a long day when you go to make a wake me up coffee only to find when you sit down that you had already made one only a couple minutes ago. At least back to back coffees was a nice indulgence.

    Thankfully I was alone at work. Not sure I could have managed conversation and spreadsheets. Today the spreadsheets got the best of me anyway. Nothing like looking at row after row of numbers to help wake you up – NOT.

    One thing is clear – my tiredness makes me a sitting duck to stupidity. Driving back from work today I picked up our son from school. Soon the tiredness really started to catch up with me. While driving I fumbled around next to me for anything sweet and sugary. Unfortunately I completely forgot that I had not yet disposed of my son’s ear plugs from Kiss. Repeating the disaster from last year I again sampled the taste delights of used earplugs.

    I was that tired I didn’t initially realise the humiliation. Just chomping away, just marvellous. The first indication was the hysterical laughter coming from next to me.

    I secretly hoped you would do that again. You are often so predictable. So predictable I actually cleaned them first. See I’m nice that way.

    Very kind of him.

    Later I took the dog for a walk. No that’s wrong. This evening the dog took me for a walk. I was definitely in autopilot mode. We ended up in a random, new field. At least it was beautiful. I could happily have crashed here for the night. Not sure the farmer would have been that impressed with the sleeping trespasser. It took me a while to figure out how to get back home.

    Anyway I’m back now. Hoping for maybe 4 hours tonight. That would be nice but I’m not holding my breathe. I will take any sleep, any at all.