Neurofibromatosis and Me


One thing that people don’t know really about me is that I have Neurofibromatosis. I use the verb have, rather than ‘suffer from’ because I have been quite lucky in life that it has caused very few problems. It is a little known disorder, although more than 1 in 4000 kids are born with it (my daughter included). In short it causes fibrous tissues to grow on nerves. They can be deep in the body, or also near the surface. Thankfully I have the least aggressive form of it, and a very low grade form of it. There are also visual clues to people who have it – such as large discolourations on their bodies; these are known as café au lait spots, and dark circles under the eyes that can look like I have a black eye if I haven’t had enough sleep.

I’ve met only a handful of other people in my life who have had it, and sadly for most of them they are in a much worse off way than I am with the symptoms of this condition.

I was diagnosed with the condition when I was quite young, so I have pretty much known about it for my entire life. Aspects of it I used to be quite self-conscious of. I have several café au lait spots on my chest, that as I was younger I disliked very much, and went as far to wear a shirt every time I went in the pool even indoors.

I developed my first tumor before I was even thirteen. I remember small moments of this, as it had grown on the inner part of my bicep on my right arm (I have not so fond memories of knocking it and the pain being unbearable). I persevered through the pain and discomfort of it until I was about 15 or 16 when it started to grow. I recall having my appts with the Dr – and moments in the hospital before and after my surgery.

Thankfully I was symptomatic free until a few years ago when I had another tumor grow on my left ribs. For a couple of weeks I thought I just had bad indigestion, but one day on close inspection I realised that it was indeed a tumor. As it grew, it started to get extremely painful, and I was quite dependent on (then over the counter at a chemist) codeine painkillers. Since then codeine is now prescription only, which is an utterly ridiculous law. Having been through a very short moment of being in tremendous amounts of pain, I sympathise with those who live with this type of pain for years, or even an entire lifetime.

I went through an unnecessary procedure (fun fact – X-ray’s do not show fibroma tissues – if you think you might have a tumor – please PLEASE ask for an ultrasound. I then had my pre meeting with my surgeon, had the surgery, and was pain free within days (I then stopped taking all those painkillers straight away, and can honestly say the detox from this was horrible – I was in bed for almost two days!)

Both were removed successfully, and both were, as expected, cancer free.

Recently the condition has been made aware on a few different TV shows (I’m fairly positive House, and Grey’s Anatomy have done episodes on it, but one of the more positive ones was in Bones, where it was brought to the surface to make people aware of it. Also the always brilliant Gillian Anderson is a spokesperson for it in the United States.

I’m lucky in regards to the severity of my condition. I’ve seen others who have it much worse – for those of you who follow me, and read my posts, you may not have even heard of this condition until now – but if I can get the word out about it, and let one more person know about it – then I have done my part in being one of those suffering from it. I now also face to process of both my own life with it, but also my daughters.



Well here we are folks – it is just about August, it is officially past half way through the year, and in just over a months’ time, those damn Christmas decorations will be up on the shelves in stores… well in Australia at least. I often wonder if other countries are as premature as we are about putting decorations on shelves – I quite admire the American way of life in this aspect. First you get through Halloween, then Thanksgiving then you have Christmas to deal with.

This post is all to do with my August goals, not just online, but also with my personal life. Personally I have been trying to look after my health again, I have been starting to work out in the mornings again. Not crazy exercising, I have neither the time nor the willpower to get myself to a gym again. I tried it earlier in the year and managed to get there once a week. Not enough to pay for itself, so I think I have given up on doing that again. Slowly the mornings are getting slightly warmer as we creep out of winter, and into spring. Part of this is due to wanting keep healthy, but also as I am turning 35 next month, it is getting harder to do as I get older. I might not always look or feel (or act) my age – but every now and then I do have the reminder that I’m getting closer to 40 than 30 – and I have begun to wonder where that time has gone.

I have also got to start changing some things in my diet – once again – things that I could do and eat 10 years ago is slowly and sadly catching up with me. To help with this, I have started to cut out things– like alcohol (I am no longer drinking at home, unless I have guests over) – I did have a few while on holidays recently,. I have almost cut out energy drinks entirely out of my diet, I used to drink at least one a day, and sometimes one of those were the 500ml ones (sorry to my USA followers, unsure of the conversion there)… no way in hell I am cutting out coffee.

In terms of my online following I have very low expectations here. Currently I’m sitting at just over 300 followers on Twitter. I feel obligated to you all who do follow me there to write more frequently. You all took the time to hit follow, and I need to make that up to you to continue to write my content.


On Instagram I have just shy of 50, and 5 people are subscribed to this blogsite. I would be grateful to get to get to 350 on Twitter, 75 on Insta and 10 blog followers. I have been sitting in the mid 30 followers on Facebook since I started this online journey, it is where I began it, but I do not really see that number growing too much, and I’m not really pushing it that much either. I was tempted to close it at one point, but a good friend from a few years ago – who I have not spoken to in many years (life does that from time to time) reached out and let me know how much she was enjoying my writing and how I was getting my words out there – especially when it came to my son. It was just what I needed to hear at a time I needed to hear it.

I am happy where I currently sit with my career, if anything I would like to be able to work less to focus on the family and the house. But at the same time I want to work more – for the last 10 years or so I have worked above full time hours, and I still feel an obligation to my employer… that is just my overthinking coming to play. I will likely be up for a step up in position in store – which is basically going from a beginner role to intermediate role. There will be no extra responsibilities, but there will be extra money, which is always a good thing!

Kids wise, miss 4 is back at Kindy we will have to push her a bit harder these next two terms to make way for reception next year. Cannot believe my little girl will be a school girl. Does not seem right or fair that she has to grow up. Can she just stay little forever (and can we all just stay young forever???) Nah scratch that, just pause this moment in life forever – I’m at happy at the moment, wish it could stay like this.

For Mr 2, we are set for our first lot of speech development, due to start this week coming. We still have not had our interview for our funding for this yet – which I am not surprised at in the least – and more annoyed about than anything as well. I will hopefully write and post ‘Journey part 3’ in the next month or so.

That is it folks. What is your goals for August, be in personal, professional, online or even with your writing (I might try and start that book this month… “might”). Drop a comment in the comment section!


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Book Review – Clancy the Courageous Cow


First Review. More to come in time…

If you haven’t come across this one, don’t feel bad – it is a relatively unknown book by author Lachie Hume, from Adelaide Australia who only has one other book in his bibliography. I came across this kid’s book while I was at Uni, when one of the then publishers of Omnibus books came to visit. I was immediately drawn to the story – not only for the story it tells, but also due to the fact that the author was only 12 years old when he wrote it – and didn’t publish it until his adulthood. There is a cute little blurb at the front of the book that tells the story of Lachie handing this story in for an assignment and getting a 9/10… possibly due to Clancy is a boy, and there are no boy cows (they are bulls). This has now become a staple in the nighttime reading list my daughter requests.


The tale begins with Clancy – a cow – who is born into a herd of Belted Galloways – but unfortunately he was born without a belt – he is totally black. Seen as an outcast at first, he does everything in his cow control to give himself a belt (humorously, like putting a bandage on, and covering himself with ice or sugar).

His herd lives in a pasture next to another herd, called the Herefords, who are all much bigger and stronger, as they have the better pasture. The Herefords have had the grazing rights to the better pasture, because they have won it – in the COW WRESTLING CONTEST – which is held every year.

He is soon the pride of his herd as he is able to sneak into the neighboring field at night and eat the better pasture. Because he has no belt, he is invisible in the dark, as all the belted cows belts glow in the dark!

While doing this, he meets a totally red female Hereford, Helga – who too has been an outcast in her own herd. Because he is able to get in at night, he too grows bigger, and this then allows him to compete, and win the contest.

Instead of taking the pasture back, Clancy and Helga, who have now fallen in love tell their herds that they should all come together, and be cows together. They herds agree, and all become friends. The book ends with Clancy and Helga having their own child, called Clanga.

I find this story to be charming in the fact that Clancy has to come to terms with his being different, and that he has to both come to terms with his indifference. It can show kids that despite our differences, we are all unique and strong in certain ways.

Also that he meets someone who is going through the same thing as he is. It is also a good tale of mix race relationships.

These two themes may not have been intentional to the 12 year old author at the time, but they are themes I have picked up.

It is a cute charming story, if you can find it – then definitely worth a read or buy.

In Review #2


I’ve been a bit quite the last couple of weeks. Life has been a bit busy due to working a bit extra. It is school holidays here in South Australia and as my wife is a school teacher, she has been able to be with the kids a bit more. Thankfully this has given me a bit of a break from my usual household duties like cooking and cleaning and laundry. She is back to the grind tomorrow, so that also means that I am too. For those actual full time stay at home parents out there, my hats off to you – I only do this job part time, and it is tough!

To my followers who live here in SA – I hope you have had a great school holiday – if you are either a teacher or parent, hope you had some good family time. We were thankfully able to get away for a couple of nights to Victor Harbor. We had a beautiful stay on Encounter Bay. While it wasn’t an overly long getaway – it was enough to recharge the batteries a bit.

Our stay had a complete Ocean view, the cover photo to this post was the view from our hotel room. Once the kids were in bed, we were able to have some time to enjoy having some chats while enjoying the view.

In the first week of the school holidays we had planned for my parents to watch the kids one night for a few hours so we could get out and have a date night. They then called us before midday and offered to come over 5 hours earlier. We jumped at the opportunity to have almost eight hours just to ourselves. We very rarely get this much time together. Our kids have yet to stay overnight at grandparents’ house as we feel that this is just asking too much with them being so young. Hopefully soon we will be able to have this happen to give us some reprieve.

We were able to on this day – which we timed so well in terms of weather, we got a day of sunshine (the following day – the temp dropped about 7 degrees, and poured with rain all day). We had a picnic in a local park, and went for a drive around parts of Adelaide we had never been before. It was fun just to drive around with no real idea of where we were going. We went for a walk along the beach which followed with a dinner with just the two of us, eating food that wasn’t cold (I would say not cooked by us – but it was a grill restaurant – so we cooked our own).

I have a couple more posts being written at the same time I write – and post this one (in fact I have two more ready to go to post in the next couple of weeks). I feel like I owe it to all (currently) 314 of you who have made the effort to hit follow on me on Twitter. If you like my content, please follow my blog here at

As always, thanks for reading.

Adelaide – An Inspired life for writing

Welcome to my first group writing post – the topic inspired by one of my social media groups.

My topic of discussion, is how living in Adelaide inspires me to write.

I look back on where my love for writing stemmed. I have enjoyed reading and writing for most of my life, and I feel it bore itself all the way back in Primary school, or even Junior Primary – where one of my teachers wrote his first book, and is now an acclaimed novelist. He was even on The Book Place (does anyone else remember this show? The one with the worm??) in the early 1990’s. I think this is an advantage of having grown up in the 80’s and 90’s, where reading and writing were more commonplace.

I enjoyed English all through high school, and even did both a Major and Sub Major in University (on my way to what was going to be a teachers degree that I changed my mind about at the eleventh hour – more on that at another time). In one of my classes I was even able to meet a fellow Adeladeian who had written a Fantasy series – and got the first edition of the first novel signed (still waiting on that film adaptation).

These examples made me feel like anything was possible when it comes to my writing – and while I feel like I have an awesome book series floating around in my brain – it is just the time to sit and write that I’m struggling with at the moment. I have told a few of my friends the idea and they all have let me know that it is an idea worth writing – in time I will definitely do this, but if you follow my blog you might understand why now is not a good time.

I am fortunate enough living in Adelaide, that it is such a livable city when it comes to the cost of living that I was able to take a step back in my career, to focus on family, and therefore put in time to build this site, and over the past half a year to write a dozen or so blogs. IfI had lived in any other city in Australia, I don’t think I would have left my last job – let alone stepped back to work part time – so living in Adelaide has most definitely helped with that.

As my son grows (please see my other posts in this matter), I look forward to taking him around the city to show him the sites, and explain the history of our city, and the state. Family days we try to get out at least a little bit with my daughter as well, and next week are planning a small getaway just for the break.

Adelaide is a great place to live – if I didn’t live here – I don’t think I would have had the opportunity to be where I am with this blog. For my overseas readers/followers, if you’re ever planning a trip down under – put Adelaide on the list – plus I’m always open for a beer or coffee.

Please feel free to check out the next blog in our Group     by Dean Mayes



Week in Review #1



Hi there folks. First genuine post in a while – life has been a bit hectic lately and have had very few opportunities to sit and type my musings. I have also come across a stumbling block in finding ideas to write about, that people may enjoy (please feel free to comment in the comments section if you have the same problems from time to time, or even ideas that you would like to see on this site). Little man has been a bit sick, which is doubly frustrating for all as he is not able to tell us how he feels. With last week of school term here, and Mrs. Adelaide Dad been working more than usual this week, and I had a few long days at work myself later in the week, it has been one of those weeks that we are all glad that is (nearly – still have to work tomorrow myself) over. I have decided to “possibly” start a “week in review” of sorts, to at least have some new content on this site at least once a week. So I hereby commence “A week in Review”.

I would like to start by wishing all the teachers in South Australia, a well-deserved happy holiday, as you all go end term two. As my wife is a teacher, we are looking forward to a short getaway during this break ourselves. Very much looking forward to it! It will only be for a couple of nights, but it will be a couple of nights and days away from housework etc.

I had a pretty productive week in the kitchen (believe it or not, it is my kitchen, as I do most of the creative cooking) – where we had a roast pork on one of the nights earlier in the week. If you live in or near the Modbury area in South Australia, check out Mellors Butcher in the Modbury Heights Shopping Center – they do excellent work there, and their quality is fantastic. It cost me less than $20 for 3kg of meat – and I not only made the best crackling I have ever made on night one, I had enough left over the next night to make a curry with the leftover meat (and lunch with that the following day).

On Wednesday night I caught up with a mate I haven’t seen in well over a year. We’ve put it on the back burner for a while, due to work and family. It was good to catch up with this friend, as he is somewhat older than me – I am able to look to him for some life advice. We chatted about all things that have been happening in our worlds (careers – we have both changed since we last saw each other, kids – I mentioned that we are having our son tested for Autism – for which he gave me some possible contacts for review while we are on the waiting list to have him assessed, and I spoke about my new self-appointed stay at home dad role). He made the comment on this title, that ‘stay at home dad’ is the wrong one that I should give myself – it gives itself a disservice – I am his parent. I liked this analogy.

I’ve also decided to cut back on a few unhealthy consumables that I am prone to (namely energy drinks). I’ve been feeling their effects lately and if I don’t cut them out now, it’ll be harder as I get older. I’m also going to try to stop drinking at home again. A few years back I had a bad problem with alcohol addiction, and cut it out completely for a few months. I’ve always known when to say when – but I think that if I do have it at home, it might lead me to old habits.

I hope you all have a great weekend, it is Saturday night here as I finish writing this (and posting) – little man is tucked in bed – the wife is out with her friends – now to enjoy some time with Miss 4.

We’re on This Journey Together – Part Two


As discussed earlier, we were unsure of what was going on with our son. The reason why we are doing all this checking is that there is had been, (and as I write these entries) continues to be very little to no receptive skills from our son. He has not responded to his name, or has yet to have his first word. Like all parents we didn’t want to think anything was wrong, but as I was going part time this year, I pushed the idea of getting things checked out with him.

We had had his hearing checked out earlier in the year at my request to the Dr. I was pleasantly surprised that there was no fight back from the Dr. – we had our first test which didn’t go well, and a secondary test a couple of months later which was quite a bit more positive. It wasn’t his hearing.

Swimming was an epic fail, as he didn’t respond to any of the activity. We instead have now placed him in a kindygym – which is essentially a gymnasium sized room with all sorts of activities for toddlers (ball pits, trampolines and a swimming pool sized hole in the ground with basketball sized pieces of foam. He loves it when we jump in together and or jump on the trampoline.

In this entry – I will discuss the two visits (so far) to our Pediatrician. We had our first visit – (at our GP’s referral) earlier this year. It was a short visit – she was very positive in the fact that we were doing something about his development at such a young age – and even more pleased with my “ocdness” in my folder for all his paperwork. She wanted to see us a few weeks later for a further test – which would test his overall development in as much as she can measure.

We returned to do this (Brigance) test – he tested poorly. While I expected it to be this way – it was still disheartening to know that realistically there is something wrong. Something that is beyond my control. I have always liked to be in control of things, and knowing that I am unable to help him with. A real positive came out of it however, and that was the comment that she left me with near the end of the appointment. She mentioned that he was very affectionate towards me, and that she could tell that he had a great love for me. This was really a great thing to hear from someone in a position such as hers.

We were next given the option of a first speech therapy appointment, which we went to a few weeks after the Brigance test. The appointment went well, and they were able to see what a happy little boy he was. We worked with two specialists, one who worked with me answering some questions, and one who worked with my son. Towards the end of the appointment, the serious question was asked about ‘what my overall thoughts are in regards to him’ and I immediately answered with believing he has a form of ASD.

We were given an application form to apply to have him properly assessed – and we are now on the waiting list. 14 to 16 months. Thanks public system!

Next step are two things, the waiting game.

Social Media – Twitter v Facebook

Originally Posted on 15th May 2018

Twitter v Facebook and Instagram

Hello readers. I’ve stolen this idea off of one of the people I follow on Twitter, so it is not a direct idea of mine – but in regards to this – finding so many original idea’s to come up with is hard. So if you are reading this, and you have yourself made a post about this very topic – apologies – but I enjoyed your topic enough to put my own spin on it.

I set up my first Adelaide Dad Blog on Facebook a little over a year ago – I left it open for a while, because at the time I was still working full time, and was a mostly domesticated husband and father – so I got very little time to myself to pour my thoughts onto a blank document. At the time, Facebook was the only social media site I was on. I opened up the Facebook page to family and friends who I know. Most of who like my page on Facebook are both family and some of their good friends.

Late last year I set up my Twitter account, and Instagram account near the end of my full time work life – had have since linked up to my Facebook page. Today I hit 175 followers on Twitter – growing daily. I have 35 on Facebook – holding steady for several months. I also have about the same amount of followers on Instagram – even though I have neglected this account, having done one or two posts in the last 3 months.

I have found that growing an audience on Facebook is much harder that growing one on Twitter – while I haven’t submitted to Promoting a post or tweet on either medium – I have found that finding other likeminded people like me on Twitter much easier, a surprising fact because Facebook has so many more people on it that Twitter. People are more generous to share and like on Twitter – and also with the use of the hashtag, I am able to find those with the same interests as I do.

I have also found myself in recent years becoming increasingly bored with Facebook as a whole – while I post on my Adelaide Dad Blog site almost daily – these posts are actually coming from my Twitter account. I barely even post on my own personal Facebook page, and mainly keep it open to keep informed of what is going on with family and friends. We post photos of the kids etc, to let others see how we are going. I have even kept a fact about one of my kids quiet on there – only really letting people know what’s going on when we see them face to face – and I’ve made exactly one comment on it in one of my posts on my site.

The interaction I have found with those likeminded people I follow on Twitter, and follow me are quite refreshing – as most of them live in other countries such as USA and UK. I’ve found that Twitter is for people who you don’t know personally and wish you did, and Facebook is those who you know personally, but rarely ever see.

I will continue to keep my Facebook page open – only for the fact that I want to continue to let my family and friends of family. I will keep the Insta open too, but rarely will I post to there either.

Ultimately Twitter is my ideal social media platform. Here is where I will continue to post – and hopefully continue to grow my follower base.


Recent Posts

We’re on This Journey Together – Part Two

Jun 19, 2018

Why we blog?

Jun 15, 2018

Challenging Gender Stereotypes

Why we Blog?


Originally Posted on 15th June 2018

Why do we blog? Or Vlog? (Maybe one day – but no one wants to see this ugly mug on their computer screen. I’ll stick to writing my thoughts for the time being to save you all from that).

The main reasons I have started this page is I want to get the message out there to other dads that it is okay to take this role. Thankfully I am not the only dad I know in this role, I know several guys in this role too. Some are like me, only able to do it part time due to having to still work part time for an income, others are thankfully able to work from home, and can do it full time.

The other more recent development, is due to my son, as you can find in my ‘We’re on this Journey Together’ posts. Part 2 coming in the next week. In short, we are in the process of getting him checked for Autism. A tough situation, but I hope in the long term, I can reach out to other parents who have the same concerns about their own young children.

Also, as a (part time) stay at home dad, I’m also finally using my University degree (to an extent) in the form of writing. It feels like forever ago now that I started (and finished) this part of my life. I began as a “mature age” student at the ripe old age of 21 WAAAAAAAAAY back in 2004, and completing in 2008. I’ve spoken to real current mature age students lately who are in their 30’s, 40’s and even 50’s – who have far much more energy and motivation to study than I did back then. I don’t ever feel like this is a life I could get back into, especially not at the moment due to current situations.

My Uni degree was based on writing – and children’s literature. I had the intention back then to go on to do a teaching degree as well, but at the eleventh hour I decided against it. As the years went on, I let this fall by the wayside along with my reading. After kids came into the picture, this became increasingly more difficult. Even finding time to sit and read a book is tough on the best of days. Most of the time I am writing these posts, it is usually when I get up at 5am, or once the kids are in bed.

I’ve made it a necessity now that I need to write a post at least once a week. At the present there are under 240 of you kind soles following me on Twitter, so I need to keep you folk wanting more. Also, if I can help others in the same situation as me, then I have done what I intended.

If I could set myself an unrealistic goal with this blogsite (including my Twitter and Facebook) – I would love to get paid to write one day. Just enough to make paying for this site profitable will suffice. I like my current job enough that I do not really want to give it up. One can dream.

Thanks for reading.

Recent Posts

We’re on This Journey Together – Part Two

Jun 19, 2018

Challenging Gender Stereotypes

Jun 6, 2018

Making Friends After 30

Challenging Gender Stereotypes

Originally Posted on 6th June 2018

Since joining the world of blogging – which is part in parcel thanks to the fine folk of Twitter, who have helped me reinvigorate my passion in writing – I have seen many men in the same boat as I am – in the role of a stay at home dad. Thankfully this is becoming more commonplace, but we still make up a minority of households

There were a few variables that led to me taking on this role in the first place.

Firstly, it was needed. Our daughter was starting kindergarten and someone needed to be the one to drop her off at 9, and pick her up at 3. My wife and I were both working practically full time – and as my job was lower pay – it was decided that I would be the one to step down.

Secondly, and mainly I’m also (without sounding too braggy sorry) much better when it comes to doing housework; cooking, cleaning, laundry etc. I believe this stems from how I was raised. For quite a while, this same scenario played out in my own childhood. My mother has the same career that my wife does now, and it pays quite well. Well enough that my dad too worked part time on and off for a lot of my childhood. It was he who would make lunches in the morning – drop me off at school, and pick me up after, as well as many other jobs around the house.

I look to the way he raised me in the way I will raise my own children. However, god forbid if they ever want to follow any sporting – that was sadly one thing that I never got into as I was a child. It is one of my regrets that I never embarked on anything in sporting as a child. I was never the biggest child – and as an adult I still am not (I’m barely 5’4). I will happily sit and watch a game of football or cricket with others, I know enough about both that I can adapt to my environment – but I am far from a fan of either.

A few weeks ago I was doing the dishes as my wife was playing one of her video games. I’ve never really been a fan of video games – possibly due to being born in the early 80’s – I was in my mid-teens before all the popular games, and consoles came out.  My teens I was more interested in watching movies, and growing my (then VHS) movie collection. This too I have grown out of. That night we both joked about how much the roles are reversed in our household. I’m fine with this. I’m proud to be such a homebody. It will show my son when he is older how he needs to respect any potential wife, and show my daughter how she should be respected as a female too.

I’ve only had a small amount of negativity towards me taking on this role. I thought I would be offended, but as they are people who don’t know me personally, I am not. I’m happy to challenge the typical household dynamic, and with it gender stereotype. I have two little people who love me more than anything, and I wouldn’t change that one bit.

Thanks for reading!

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