This will be long and no doubt most of you won’t read much beyond the first few paragraphs I know but I feel there’s a need to share my year that has been 2018. It has been an extremely different year with a lot changing and moving in so many senses, a lot of which I have ironically kept to myself along the way. Very few people have been given permission to know more but as the year has gone on I’ve realised that being a little more open can be helpful, with some of the things from this year it’s become a motivation for what I aim to do with myself going forward.

GENETICS

As I have eluded to in previous posts my oldest son suffered from a bout of Henoch-Schonlein Purpura (HSP) in 2016 which had him hospitalised and extremely ill. Since then he has suffered from a number of different ailments which we have been back and forth to the doctors with. In the last 8 months, we have had him undergo a number of tests which have all left us still none the wiser about what is going on with his body.

In September this year, we were hit with the news that a blood test had revealed a partial deletion on one of his chromosomes. Of course, when I received the letter I did the usual thing of Googling the associated disorders and felt the world crumble around me. To make it even harder both his mum and I were referred for our own screening to see if we had the same deletion as the chances are it is hereditary. At the time of wirting, we are still yet to get the results considering we had the test in September.

Being told that there is something invisible and missing from your child is heartbreaking but when we look at others with a Chromosome 12 deletion we realise at this point we are relatively lucky. That’s not to say that his journey is over and we continue to see him suffer from ailments including joint issues, weight issues, mobility, coordination amongst many other small symptoms that as he grows up begin to make bigger issues. We have no idea what lies ahead but we know that he’s still our boy and I have still climbed mountains with him and intend to continue to.

With this discovery comes the looming possibility that this may be an issue for one of us (his parents) but also potentially my other two children too.

Considering he wanted to have lots of children and climb mountains and be a Police Officer it seems the world is continually throwing new obstacles the way of his dreams. I take it as my job to achieve what he wants and show him, leading from the front, we can get there.

Which leads onto…

DIFFERENT LIKE HIS DAD

As part of the genetics issue there are links to ASD (Autism Spectrum Disorders) and earlier in the year, we referred our middle son for assessment over his on-going behaviour. With him, you have never met such a loving, caring, amazing and gentle boy as my youngest son. He has never been one to fit in and we have had our fair share of horrible experiences with other children and parents at school making his journey through life all the more difficult.

We began to notice an element of withdrawal, anxiety and little behaviours that led us to think that perhaps there was an underlying and unidentified issue at play. So yet again we referred to the doctor (we do like to keep the NHS working clearly). That whole experience was painful from start to finish if I am totally honest! My youngest son is the reason I decided to publish my books as I always want to show him that his imagination (that he gets alienated for) is a bloody wonderful thing and should be celebrated not mocked.

The assessment phase was going steadily, albeit with regular reminders to those assessing him but it all came to a stumble when school really didn’t help with the assessment. Having compiled heartbreakingly honest accounts of his behaviours and actions, allowing him to be assessed in school and opening up the family for scrutiny I was mortified to find the only thing school could offer was a single line per behaviour which basically said “reads at a normal level,” “writes at a normal level,”, “communicates at a normal level.” All this did to me was to highlight the fact that the school had no idea what or who my son was. Needless to say, he moved classes in September and already his new teacher has noticed he is emotional, needs comfort and routine and seems far more in tune with him.

Alas with the ASD links to the genetics identified in my oldest we have to wait to see if it is isolated to him or potentially something the youngest has too which may help in redressing the abandoned attempts to identify any ASD in him.

With my youngest, he has had a difficult ride in school and has been alienated by pretty much all the boys because he is different. This year, although he is only eight, we decided to attend Pride to show him that no matter what, being different is something to be celebrated and worn not hidden and boxed away. We don’t know where he lies in that sense as he is only young but I don’t want him feeling being different in any way is something he should be made to feel bad about.

We have a long way to go with both the boys and we haven’t even started with my daughter yet……so far so good with her (other than being a girl and I really don’t know how to deal with her!)

WORK RELATED

The year started on a massively turbulent ride because of incidents at work that I have to keep separate from my writing persona. Needless to say, I was forced to assess my own wellbeing when two incidents brought me into the limelight for external investigations. Neither came to anything but for the time that was taking place I think my stress levels sky-rocketed and left me feeling very much alone as I try to not bring work home due to the nature of my work.

For the start of the year I spent 3 weeks taking myself off active duty to make sure everything about the investigation into me was clean. When I got signed off with nothing to answer it was like a massive relief and I was able to move on from what turned out to be the most horrendous January and February I’d had in a long time.

Later in the year I went on to fail a promotion process but instead passed an internal job upskill which led to a stressful November-December where I was staying away from home (which I haven’t done since having kids). This was the second hardest course I’ve done at work (the first being the 12-week course to work in the arena I work now). Stress as a word doesn’t even describe how I felt but I’ve also realised I underestimate myself a lot.

BE HERE NOW AND RAVENS

With all that happened this year I made a transition and had my moto BE HERE NOW tattooed on my forearm. A few months later, with the help of my imagination and the amazing skills of my tattooist, we created The Raven’s Journey which I now proudly have on my right upper arm. Having never thought about it before everything was aligned and it felt right so I followed my heart with that.

Some people don’t get the design and wonder why I didn’t go for a traditional sleeve design but that’s because I’m not “normal” and then whatever I had wouldn’t have been me. What I have is a very personal piece of artwork that tells a whole story and if people ask I will share it with them. When I had the second sitting it was the day after I found out about my oldest son’s chromosome deletion and I had the number 12 (the specific deletion zone) added to the design. It felt right and again solidifies my journey all the more.

2018 has been an odd journey, I’ve made new friends along my turbulent ride who have perhaps taken the time to see behind the masks I put on for public show. It’s a defence mechanism I know I have to wear a mask for the most part and appear witty, confident, cocky, playful when sometimes all I want to do is just be away from everything which is where my journeys to the hills, mountains and countryside come in. With Archy (my dog) we can disappear a lot and when I’m allowed to be alone my head can often declutter. I’m probably the most introvert-extrovert you’ve ever met. Lots of people think they know me and how I am but very few actually bother to find out who is behind the mask.

Moving forward I have managed to vent a lot of the year’s frustrations into my stories and characters which is where I suppose I am lucky. Where most benefit from talking or close friends, I can expel a lot of things vicariously in my books which can be a very useful outlet.

For the future, there still remains a lot of uncertainty and I can honestly say this year has changed me. The family have all faced new challenges, each reacting in our own way and will continue to do so for a long time yet to come. I have my mountain bikes, my walks, my books and my friends I choose to let in. I’ve never been one for talking, I know I carry more than I need to a lot of the time and am incredibly hard on myself but that’s kind of who I am.

I’m not saying my life is any harder than yours, any worse than anyone else’s but sometimes when you see my vacant stare it’s not because I’m bored it’s just my way of being sometimes. I don’t tend to share very often but on my course I found myself talking to some of the guys on the course and found people were actually surprised by how much I did keep to myself. I also found that there are people out there with problems similar to or even worse than mine.

For 2019 I intend on allowing myself to inspire my children, showing them what can be done. I will also continue to write no matter the feedback (although that seems to be predominantly good and/or constructive so I need to chill out with that a bit). I need to stop trying to keep the whole world happy at the expense of me and only ever want to be an inspiration.

For 2020 my plan is to finally take a photo of Everest that my oldest can have and say “my dad took that.” I remember when he was ill with HSP and all he asked was if he could walk Snowdon again (he has twice climbed it since then). We watched Everest then an both said when he’s old enough we will go together and while we may never be able to afford to summit we can at least stand in the shadow and say we’ve made it that far. I want to do it before to show him yes we can achieve many things no matter the hurdles along the way.

I’m sure there should be more but even no I doubt many will read to here.

That’s me being open, sharing some of this year and how it has motivated me to, as my arm now says……BE HERE NOW.

[image error]Three little words seem to cement what I need to remember


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