Gone

By Scott Bailey © 2017

Gone
The blue eyes sparked with new
Gone to shadows

Gone
The play, the cowboys and indians
Gone to payments and tax

Gone
The times to stop and breathe
Gone to endless turmoil

Gone, gone gone

A little magic
A little luck
Is needed

Photo by Ron Lach on Pexels.com

Autism a Colourful Spectrum

A reminder – for me – and anyone who needs it.

Amongst all the dreary advice and articles I have read I came across this comic. Which I think is just brilliant

introduction to colorwheel autism spectrum

The original article is here.

Tempting

By Scott Bailey © 2017

Blank white paper sheet
Tempting me to slash with ink
Cutting with dark words

Photo by John-Mark Smith on Pexels.com

Crossing Out

By Scott Bailey © 2017

Crossing out
Deleting
Inserting
Adding on
Dropping
Expanding
Changing
Evolving
Inserting
Crossing out
Life
And death

Photo by Skylar Kang on Pexels.com

Man Down with Man Flu

Been a poor start to the year. I have been in bed ill for all of last week. Managed to crawl back to work today but recovery is still ongoing.

Normal service resumed soon

One of THOSE days

So TV glamour aside – the reality of living with Autism in the family.

I ended the weekend totally exhausted. Went to work determined to leave it all behind me and concentrate on a major project which culminates tomorrow – when we retire two old websites and divert all the users to the newer current one. Tomorrow is going to be a late one.

First thing I get is a hitch in that process. Second – and before I get to look at that – another site we have has a major problem! It’s main functionality stopped completely.

Deep breath! Put aside the planned work for today – deal with this.

A phone call from the wife – Our youngest -the one with Autism – who has to face a long journey on a bus to get to school every day and has been struggling with it – has finally snapped. Just like we had been warning them – and asking them to change his transport arrangements – to no avail. He has flipped out and hurt other children. Now the bus company are refusing to take him anymore. Not even to bring him home.

So now we have an issue. I now have to get these jobs done quicker as I have to leave early to pick him up from school.

So bang – get one done. Bang get the other one done – need to get them tested and live.

Another phone call from the school.

Now – he has had a fall at school and had been rushed to A&E.

Got to get this fix live! Now! And leave!

Raced over to get him as my wife is in the hospital for heart cardiac rehab.

By the time I get him home and safe my heart is racing and chest is hurting so bad I think I might be joining her pretty soon!

I would say I can’t take many more days like this but this is becoming normal for us.

Oh for the easier days!

I am just thankful I have an understanding employer.

Coming Back to the Blog

The attentive amongst you will have noticed that I have been quiet lately. Posts have been going up of course – but they are the ones I scheduled a long time ago.

I have had other things on my mind.

Two weeks ago my wife went into Hospital to have a Aortic Valve and Aorta replacement. I dropped her off at Kings College Hospital and had to leave her. She was booked in for the op the next day at 12pm. The care was superb. Then and throughout. She was due to receive a new type of valve – described as the RollS Royce of replacement valves. The surgeon was one of -if not the top – in the country.

None of that helps when I was on the train heading home while she was left there. But I was not allowed to stay and I had to get back and take over looking after our kids. Grandparents are good but they have their limits 😏

It was the culmination of a stressful time. I had just started a new job – only been there 3 months and now I was having to ask for time off. On top of that we then received news that our youngest – who has autism is likely to be transferred out of his new school. The one he had been sent to because it was recommended as being the best school to deal with his needs!

It never rains…..

So the next morning I was up early. Got the kids off to school and onto the train back to London.

It was cancelled! No problem! I had left early just in case of something like this – the next train would get me there with 10 minutes to spare. So I am on the train trying to calm my nerves and Rachel’s with texts to say I was on my way – when they announced suddenly that the train would now not be stopping at Denmark Hill! Instead it would go straight to Victoria from where I would have to get a train back to Denmark Hill.

Shit! This meant that I was not going to make it. My wife was going into the most important operation of her life without me. An op that there was every chance she might not come out of.

I was not happy with Network Southeast at that point – to say the least.

I finally got there at 12.30. Rachel was still there! The op was delayed. Some good luck at at last!

So an hour later she went in and I got to see he off and wish her well.

She was in for 5 hours. During that time I wandered around the Denmark Hill area and had lunch though I couldn’t eat much. While I did that the surgeon went to work.

He cut open her chest, sawed her breast bone in two and then spread open her rib cage. This apparently puts a huge amount of pressure on the shoulder blades – almost to the point of breaking them. The nurses told us afterwards that when he saw Rachel’s ailing valve he was shocked at how bad it had become. He said she had been extremely lucky that it had not failed already. She had had a lucky escape there.

The operation went well. The breastbone was stitched back together with wire – which will remain there, the rest was done with normal stitches that will dissolve in time. Once it was over she was sent to the cardiac recovery unit where I was allowed to see her at last.

This was when the emotional wave hit me. To see your loved one with so many wires and pipes and dressings, looking so helpless is scary as hell. She was still deeply asleep, she had a breathing pipe down her throat which I knew she would have hated had she been awake. Even in her drug induced sleep she was trying to get it out and the nurses had to hold down her arms gently.

The care in this ward was again superb. The nurses had to watch the patients constantly. Never taken their eyes off them. They had little time for me but that was not a concern, it was how I wanted it.

Watching her there like that was hard, there was the fear mixed with the relief that she was through the worst. I was worried about how much pain she would be in when she awoke. Worried about what the future held.

But on top of that were memories. I had seen her in a very similar state before. All that came flooding back and I was back in another hospital room watching my newborn son die in my arms.

I nearly didn’t get through it all then. I was waiting for the time when they would wake her up and remove that breathing pipe. Then I knew that she would be more comfortable and that she would know I was there for her.

Before that time came though – visiting hours came to an end and they would not let me stay. they were very strict on that.

So I had to leave he to wake up alone and in a strange place. That was hard. It was a hard getting on the train back home – the only thing that helped was that I knew my kids needed me back home.

Yet this was just me – I was not the one who had been through the operation. I could not begin to imagine how Rachel was feeling – how she would feel when she awoke.

When I got home I rang to find out how awaking her had gone. The breathing tube was out and she had gone straight back to sleep. That made me feel a little bit better.

Over the next 6 days the nurses and doctors imposed an efficient, hard but caring regime in order to get Rachel back up to speed. She went from beings very drugged and unresponsive to walking around the ward in a surprisingly quick time. The staff were very understanding and took everything we said seriously. They were superb. We trusted them completely and therefore were able to accept the way they pushed her to recover.

She is now home. Still very fragile but improving slowly each time. We have had a close call, a brush with death. Rachel is under the influence of a lot of drugs so there are bad dreams, even hallucinations but she is already looking forward and feeling hopeful again.

For my part, it has made me think deeply. There are changes I need to make – just need to figure then out – and stop the everyday trivia from getting in the way of making them.

I would like to conclude this ramble by saying a few things. One  – a big thank you to all the staff at Kings College Hospital- especially Professor Wendell, and to our local Doctor who picked up the issue in the first place – an issue I suspect had been there for a long time but missed by her previous Doctor.

Secondly, an equally big thank you to our family who have all been there when it counted. Helping out with childcare and housework!

Thirdly – thanks to my new work colleagues for being so understanding.

Finally – I would just like to say – well done to my wife! I am so proud of how you have handled it with bravery and grace. I doubt I would have been as good.

But then – that’s why I married you 🙂

 

 

 

 

 

 

Interior

 

By Scott Bailey © 2017

What’s inside
Distorts and shapes
The exterior
All those dreams and hopes
Hates and fears
That make up the interior
The moiling
Boiling
Packed and stacked
Stretched and tense
Earnest pretense
That inside us all
Makes us all
What we are
Rather than what
We wish

In response to the daily prompt Interior

#DailyPrompt

New Year

It was rough last year. I am not just talking about celebrity deaths.

We as a family have had it rough. We have had family members in and out of hospital, having to deal with a diagnosis of Autism for our youngest and his so far very rocky transition into school. I have had work stress and uncertainty. We have seen our social lives and our house being slowly taken apart. I have seen my writing dreams slip away.

Midlife crisis? Maybe.

I have to cling to hope. It is the only thing left.

So not really new years resolutions as such but goals I am aiming for this year.

To find a new job. But not just another role. I need to get back to enjoying work again. That has been totally destroyed of late – I had thought beyond hope – but if I give up hope then all is lost. I have been thinking about a total career change and that’s the way I will try to go.

To improve our daily lives by trying new techniques for dealing with Autistic behaviours.

To reinvigorate my writing dreams. To help with this I will attempt to complete the daily prompt as well as Ronovan’s Weekly Haiku Challenge. This is purely to get my juices flowing. Behind the scenes, I will try to put together two more poetry collections for publishing as well as another short story collection and a new novel. Ambitious but I must attempt it.

I wish everyone a happy new year and hope you all attain your own dreams and goals.

In response to the daily prompt Year

#DailyPrompt

A low January

I have been ill. Very ill since before Christmas. Mostly I have been struggling to work but the week before last was forced to work from home. This week I could not even manage that.

That’s why the blog has been very quiet and I have been reduced to reblogging older stuff.

But anyway the reason I bring it up is that it seems everyone is ill. To lesser and greater levels I don’t know anyone  who is is not ill.

Call me paranoid but it does not feel normal. Something odd is going on.

And there’s an

NHS dispute going on.

Scars

By Scott Bailey © 2015

There is a small group of people
I do not know them
But they watched my tears
As I watched him die
And they carry that moment
In their hearts
I hope
They find it strengthens them
Like a scar
Or a broken bone
It does not me

Another quiet week

Last week I was on holiday, this week I was quite ill and although I ploughed on by working from home, that took everything out of me.

So its been a very quiet couple of weeks. I need to kickstart some writing again.

Having a dilemma where to go next. I need to put more effort into marketing me existing books, and at the same time get something new out there to round out what I have. This will probably be short stories.

My dilemma is whether to try to some new ones – which is what I really want to do, or edit a very old collection I already have. The latter will result in getting something out there quicker.

First I need to get back to better health.

NaNoWriMo and life.

So those few who follow my blog (and despite nearly 500 followers I know only a few are regular followers) will have noticed a drastic drop in my output. Since finishing my year of a poem a day I have done very little since. This is despite my promise to myself to keep up the writing.

Well life always has its own designs on our plans. The old reason (excuse?) has been the lack of time. Its been a hard few months. We have been under a lot of pressure from all kinds of angles.

We are still trying to adjust to having a very full on two-year old join our family, and all the knock on effect of that. We love him dearly and would not change our decision but it is taking the wind out of our sails.

Talking it over the other day as we realised that one of the issues that has affected us in a surprising way was his age. When we signed up for adoption we, like many, were envisaging a baby. As you progress through the courses and the process it becomes clear that it is unrealistic, so we opened up our minds to a slightly older child. When it came to it, in our minds age was no longer an issue, and in some respects we could see an advantage in a two-year old. One of the driving forces behind our decision to have another child was as a companion for our oldest – who dearly wanted a brother or sister and had already been deprived of one already. A two-year old would be more ready to play and interact with him.

However the reality has hit us harder than we expected. When you have a baby – as daunting as it all seems, you get introduced to each challenge gradually. So when they are first-born, you have to learn how to feed, them comfort them, change their nappies etc. But their demands don’t go far beyond that – by the time new challenges come along you have just about mastered the first ones.

With adoption of a slightly older child, all the challenges come at once. Not only have you got to learn to change nappies but also how to get them to eat their dinner, deal with challenging behaviour and stop them escaping the push chair Houdini style and make their escape.

Now I hear you crying we don’t have to learn all that as we have already done it once. Well that’s true. But you have to get used to doing it all again, and its a bit of a shock to the system. I don’t envy people who are doing it for the first time.

On top of that, the support we have enjoyed in the past has slowly ebbed away. This is no fault of our support network, they have all had their own plan challenging life changes, and they all support us still in many ways. But the support of having someone there has fallen. For example – we haven’t had a night out together for over a year now. And the nights out alone can be counted on one hand. It takes its toll. On the one hand our sources of stress have bloomed while our outlets for it have wilted. It’s no one’s fault. Just one of those perfect storms of circumstances.

Throw in a few bouts of very bad illness, some natural disasters ( a flood and a maggot attack! Seriously!) and it all adds up.

And then there’s work. We are balancing on a knife’s edge of survival. We have run that knife’s edge for a few years now. It’s a situation of risk, where we could crash and burn or reap what could be ripe rewards. Those rewards draw ever closer but as they do the risk and the pressure increase. Due to my position a lot of the physical responsibility falls on me. No solely but were I to get something wrong it would tip the balance enough to crash it. We are all in that position at work really and after a few years of it, it is tiring. Many late nights home and sleepless nights worrying.

So that I hope is some sort of explanation as to the lack of output.

Two things further to say. Firstly – that all sounds like doom and gloom but it’s not. In all areas we are making progress. A few months ago we felt like we were drowning. A few weeks ago like we were treading water. Now – we are swimming strongly towards shore. It’s some way off – but we will get there.

Secondly. Many people would say that if I had a real passion for writing none of that would matter – that I would make the time to write. Maybe that IS the difference between a successful writer and an amateur. I do love writing – but I also love my wife and kids and I can’t put down my responsibilities to them for my passion. I think that would be selfish.

That said – I have decided to give myself a rather large kick up the arse in the writing department. I am going to try the nanowrimo challenge. (Maybe unofficially if it’s too late to sign up formally.) For those who don’t know it it’s National Novel Writing Month. The idea is to write a 50,000 word short novel in 30 days. (The official website is here http://nanowrimo.org/)

Now I have all the same everyday stresses and challenges but I thought – sod it! I am going to attempt it despite all that – because it is difficult not easy.

Trouble is I am fresh out of ideas! I mean I have loads – but ones I think need longer than 50,000 words.

If it comes to November the 1st and I have nothing still then I will attempt the technique of just starting writing anything and see where it goes. Not something I have ever done before, I usually have a plan, even if it’s very rough.

But in the meantime – if anyone has suggestions or prompts they would be welcome. Maybe a title? Or just a single word? Perhaps a concept to explore? I like combining two disparate concepts into stories, that normally enlivens things. So maybe if I get enough separate ideas I will combine a few of them.

So wish me luck! I need a lay down now to think 🙂

Poem a day challenge #142 (Sick)

Sick

By Scott Bailey © 2013

Feel as sick as a dog
Too much work not enough play
Dulling the senses

Get the previous ones here

http://wp.me/P3kG6h-bb  and get my début novel Mankind Limited

Poem a day challenge #128 (Health Gains)

Health Gains

By Scott Bailey © 2013

Giving people health
Appears low priority
Set against profits

Get the previous ones here
http://wp.me/P3kG6h-bb  and get my début novel Mankind Limited

Poem a day challenge #87 (Pain in the Back)

Pain in the Back

By Scott Bailey © 2013

A pain in the back
Plus lack of sleep is the bane
Of relaxation

Get the previous ones here
http://wp.me/P3kG6h-bb  and get my début novel Mankind Limited

Poem a day challenge #83 (In Sickness and Hope)

In Sickness and Hope

By Scott Bailey © 2013

Tiredness saps me
Nausea weakens my soul
Hope is a hand up

Get the previous ones here
http://wp.me/P3kG6h-bb

And breathe…. 1.2 .3…..

So now I have had a phone call from the doctors – my blood pressure is high – but probably because of the situation they caused yesterday. So I have to go in tomorrow first thing to get it redone! grrrrrrrrrrr

This is the sort of needless delay that frustrates adopters. There’s just no need for it.