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Another year older!

Mr Danger and his twin-sis are about to turn another year older next week – the big 8!

To think that we have had another brain surgery in the past 12 months, plus a further confirmed diagnosis for his twin of intellectual disability, makes me feel elated and exhausted at the same time!

Answers are slowly unfolding over time, because kids who are neurologically different face different types of challenges to those who are not – there is no checklist, standardised test or baseline to go on, other than their own. And as their parents, we are constantly learning to.

As I’ve said many times before, I don’t live with a disability but I sure as hell advocate and assist those that do, and in my instance – I refer to my twin son and daughter. Just when we think we may have figured something out, we get thrown a curve ball or another set of questions which need answers to. Not all those answers come to light the first time though, or even the second, third or fourth! 

Sometimes we don’t know any of the answers, and neither do the doctors. We are on a journey of learning and we take Mr Danger’s lead. The latest is that we are now battling with some extreme behaviour issues which are impacting on his learning, growth and development. There is no easy answer other than to take day by day and experiment with different medical and therapy options.

We are lucky to have guidance from a great team around him about what we can trial and error, but like everything, we can only be guided by Mr D.  It can be difficult at times for his sisters to understand why he is challenging at times and it sure does upset us all to see him distressed.  This is when we are at home.  So you can imagine when we go out into the community, the impact and emotional toll it takes on us. 

I don’t offer explanations to people anymore, the sizeable scar on the side of Mr D’s head usually is indication enough that he is struggling with something outside the ‘norm’.  They only see a scar, they have no idea the impact that one scar has had on him, and us as his family as we support him.  

We love him the way he is, we only want to take the frustration away from him that he encounters daily, but we know that takes time, effort and persistence with chipping away at these challenges for him. 

We are here to support him, and we thank those that continue to do the same, who become involved in getting to know our family and our dynamics, and hopefully make the next family who have this rollercoaster ride in front of them, feel just as supported as what we do. 

The Summer of Milestones

Or ‘Mikeystones’, as I’m now calling them!

If only I had known back then, what I know now.  That ‘all in good time’ applies to this kid and that there is no other timeline he’s working on, other than his own.

What a sense of freedom this has instilled in me, as I begin to truly understand what this all means.

Although, I’m yet to fully comprehend it on an ego level.  I still battle with what society deems appropriate, and I kind of zone out when people talk about levels and scores.  Qualities such as kindness, compassion and humour cannot be taught.  Yet he has them all.

It’s taken me several years to come to a point of understanding with this.  It was there all along, but with the relentless pull of therapy, specialist appointments and years of hospital, the to-ing and fro-ing of trying to ‘do it all’, left me feeling overwhelmed and a tad exhausted.

I was overwhelmed with it ALL.  The pressure of what was put upon me, as the mum to somehow ‘fix it all and manage it all’.  However, the true teacher was Mikey who would show us, several years later, how he adapted to his environment to make it work for him.  How he used his body and his communication to be understood.

Years later, we would figure this out, that you are the true master of your own happiness and no one else.

Unfortunately, I was focusing too much on one thing in my life at the time, and made no time for self-care.  I burnt out.  We were heading towards a breakdown in our marriage, and the strain on my friendships and family relationships was inevitable.

Unlike my first baby, who has and continues to develop ‘typically’ and is almost a teenager (eek!);  even over the years, with boxes that are not checked or challenges that are faced, it is more-likely to be explained as a very typical and usual ‘delay’ or ‘absence’ (can’t be good at everything, right!).  Nothing that can’t be helped with a bit of ‘additional work’.   We aren’t talking years of therapy to do what comes naturally to the human body or the usual process of learning.

I received many ‘condolences’ for my sick babies; and as he grew, my disabled son; I actually grew tired of the sadness surrounding it all.

Why weren’t they amazed at his progress like I was?  Oh yes, I kept reminding myself, we live in a world, where being different is not actually celebrated as much as we say it is.

Where was the joy, the uplifting feelings of my own gratitude and the unwavering  support that things would be ok.  He would have a life long disability, but our world supports people just like him, all the time, don’t they?  It would be ok, wouldn’t it?

However, the daily responses I continued to receive with ‘oh I’m sorry’ or the cringe-worthy ‘it could be worse’ would get me every time and take me right back to feelings of despair, depression and overwhelm I had felt before.

However, I was fortunate in those early times to have joined a playgroup which allowed me to meet others who were travelling a parallel path to mine.  Where their child didn’t tick any boxes at all!  We created our own support network, as parents (mostly mums at the time, but sometimes a few dads) whereby we checked in once a week with our feelings of overwhelm, that we knew, on some level, were being understood, despite our different set of circumstances.

I call this my life-line.  This was my weekly sanity saver, if nothing else, I dragged my exhausted butt from my bed, put my twins in the car and off we went to our weekly playgroup of children with special needs/disabilities.  It saved my soul.

When asked the right questions, parent’s eyes would light up, talking about their child and what inchstones (milestones all the same!) their child was working toward, and what was on the horizon.  It was liberating to hear of such progress and joy in a world which at times seems focused on only one thing – unattainable perfection.

As a parent of a child with a disability, I have had to work much harder then that of my eldest daughter to advocate for his needs.  Some may not understand this, and that’s ok.  Not everyone will understand.  It is not their path to travel.

Understanding the significant difference in the first place, helps support the families that need this help, so they may support their child the best way possible.  Ask any parent with a child with a disability, they will tell you the hardships and battles they have endured to advocate for their child.

Now I happily realise that he isn’t here to tick the boxes.  He is here to show me, and the rest of the world, that by not ticking the boxes, he is changing the status quo.  For so long, the strive for perfection, excellence drummed into us by generations gone by is not working.  Stress and anxiety are at an all time high in our western society – there is so much more to each individual than the boxes they tick and what others deem as ‘successful’.

So this Summer, with Mikey D’s ‘Mikeystones’; I’ve seen him master riding his bike at a bike park (new obstacles in a different environment). Not once did he run off or dash toward any cars (a pretty regular occurrence once upon a time!)  I saw him pick up a hat and run to the mother, to give it to her – ‘hey,hey, hat!’ he excitedly called out to her.

He is seven years old and he is doing life his way.  To the outside and usually  misunderstanding world, he may look like a little boy who is severely ‘delayed’ but to whose standards is this delay?  Our Government, our politicians – you or I?  What exactly has been drummed into us?

Is it time to unravel it all – I think it is.

With everything he’s achieved so far in his life, all the challenges he’s faced and continues to face, he continues to keep reaching ahead and push forward.

Some days it’s in leaps and bounds, some days it’s inchstones and other days it’s Mikeystones!

It’s the most wonderful time of the year!

It really is!  😉

I have had a little read tonight on posts gone by, and this time last year I was most upset with who I was keeping company with!  No one in particular, it was just some experiences with the whole debacle of trying to keep one foot in this world and one foot in the other.  The living 2 lives, that I so often feel that I am being pulled in different directions.

The one where I have to pretend that flouncing around is where I want to be at, and not actually flopping on the couch.

It would be remiss of me not to mention that of course last year, I was in a different place.  I was still reeling from the wonderment of Danger’s surgery that had been such a success.  To acknowledge this correctly, I have to really consider what changed that day.  I also changed that day, I really did.  (sorry to make it about me, when it’s about him, but there is a connection that I just can’t seem to break!)

And now a year later, and I can truly say that I am in now another place, a cross roads even, where if I dare to, I can allow myself to think about how to make things even greater for us.

And I think I have found the answer!

To say NO and to push back a bit.

I think for so long I have been pulled this way and that way, when deep down Mikey has shown me all along that he was going to be ok.  That it was just all the white noise telling me that I should be questioning it.

But it’s not that at all.

Mikey doesn’t fit into a box, and never will.

I will do my damndest while I’m here to give him the experiences he so desires, just like any other child.  To help him create that pathway for him into his adulthood.

It’s going to be one hell of a ride, it already has been!

2019 is about letting that white noise wash over me, and finding the truth within myself.  It is very hard to do at times, it’s almost like a meditation, it takes practice to shield yourself from all the would’ve, should’ve, could’ve’s that get thrown at us on a daily basis.

Just for the record, there has been no golden key or special way, that Mikey has recovered and pushed forward with his recovery.  The most important thing to me was to have him back home with his sisters, doing what we all do – going to school, hanging out on the weekends at the beach, park or home and just being a kid.   We have been extremely fortunate that complications didn’t arise that needed him to be in hospital any longer than he had to be (2 weeks!).

After 6 weeks, he was back at school, and at 8 weeks back on a horse.  At 6 months, we got him a 4 wheeled motorbike to help with his toilet training.  The connection has been amazing and we have seen with our own eyes, the progress he’s made since his surgery.

It’s certainly not orthodox, but then again neither is the surgery!

I do have a great teacher in front of me, and how fortunate that I am learning from him to really not only to think outside the box, but also to live outside the box.

 

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The internet can be a great place, it’s where families connect, friendships reconnect and friendships are formed.

It’s where parents of children who have rare syndromes and disabilities can find understanding and compassion by others that are facing similar situations to themselves.

It is hard enough to parent a child with a disability in the challenges we all face.  We all feel, at different points in time, that we are doing it wrong, have days where we don’t know if we can do this, whether anything we do is right.  However, if you choose to call your situation ‘special needs’, it seems that you are doing that wrong too.

As decades pass us by, we see the fading of many a term and words used, that no longer are appropriate or used in the same context.

Whether you use the term special needs or not, I have a slight problem with making the parents feel that they are doing yet another thing ‘incorrect’.

It’s time to be more supportive and sensitive to those parents in the trenches who are just trying to make it through the day and do the best for their child. without being hammered about what term they use and that ‘special needs’ is perhaps one of those words no longer to be used.

The reality is, when parents are siting in the doctor’s room, and are hearing for the first time what their child’s future may look like, there generally isn’t a disability advocate in there giving them the low down on terminology regarding disability.

Lets support each other in these early days and support the way forward for these parents that are new to this world.

As a parent of a child with a disability, I too have evolved with the different terms I use as my child leads the way and shows me a different perspective.

All of us are here to make our children’s lives richer, and in those early years, it is seemingly a mammoth task that some days, we question if we can really do it.

But we will.  And we do.  And we will make the changes, make the mistakes but we will also grow along the way.

The term kick-arse comes to my mind more frequently nowadays 😉

The beginning of danger!

We didn’t realise that by giving him the middle name of “Danger”, just what we were instore for.  It seemed that his fate was written in the stars, before we even knew it!

It was September 2011 and I had given birth via emergency C-section at 3am.  I also didn’t realise how poignot 3am a time was, as that time would feature highly for many years to come!  Bryce, my husband at the time, said excitedly to me, can I still give him the middle name of DANGER?  I’m about to sign the birth certificates for the babies!

As my eyes rolled back into my head, I muttered a yes, before dropping out of consciousness!

I woke up in another room, away from my 2 babies.  I had no idea what was going on.  Within moments, Bryce came to me, eyes beaming telling me happily that Michael “Danger” and Jasmine “Erica” were now being looked after in NICU (neonatal-intensive care unit).

70 days later, we were able to take them home.

1 week later, and we would be vising the hospital again with a sick little Jasmine for another stay in the children’s ward.  One of many to come over the following 12 months.

To this day, I think that Danger was the name that chose him, not the other way around.

While his little twin sister ‘Jazzie’, was busy battling her ‘failure to thrive’, many bouts of chronic respitory infections, ‘Mikey’ was kicking goals with eating, sleeping, pooping and generally growing into a big and robust boy.

Wherever we went, people asked quizzically if they were twins – and sounding surprised when we answered yes.   Even more suprising, was when asked if our boy/girl twins were identical!  (think about it…!)

As Mikey started to meet his milestones, and travel along the growth charts, Jazzie was travelling along her own timeline.  It would be years later until she would even hit the 1st percentile on a growth chart (I think she was 5 when she hit that first percentile!)

Mikey had his first seizure just shy of turning 1 years old.  That seizure changed his life and our life as a family, forever.  It would completely alter the progression of the little  boy who had the middle name of Danger, who spent 70 days in the NICU and Special Care Nurseries with his twin, to something completely different.

The little boy who had just learnt to crawl the week prior, was beginning to talk and become familiar with the world around him had lost it all through one prolonged seizure.

This would only be the beginning of more of the danger to come…

And just like that, he no longer eats blue loo!

Where does the time go!

It’s been a big 7 years, and this one, 2018, has been particularly noteworthy.

It seems like only yesterday he was digging into a jar of vegemite on the cream coloured carpet in our rental property, to chewing on tablets of blue loo.  Nowadays, you’ll see him more discerning with his choice of savoury snacks, opting for an apple or 12.  I usually find 3 a day – one in my bed, one down the couch and another under the table!

If you had told me that the days of chewing on blue loo tablets would one day be over,  I would have sighed, and said ‘if only’.  That regular phonecalls to the poisons help line – ‘my son has just put a dead cane toad in his mouth’ – would one day be a thing of the past, I would’ve given you an eyeball roll so steely, you wish you had eaten a jar of vegemite.

But yes, it’s true!  All those funny little antics, with the above being on the more dangerous side, are what our memories are made of.  Our little Danger, who is no longer so little, is near to finishing his first year of school of living with half a brain, since his life changing operation last year.

The choice of whether you want to operate on your child to have a hemispherectomy does not come easily to any parent who has faced this decision – or currently are facing this decision.

It is a mammoth feat of one’s emotions as you are hit with a barrage of all manner of questions:

  • is it the right decision
  • will it even work
  • what if the seizures come back
  • how will his siblings handle it
  • will there be enough jars of vegemite to sustain him through his recovery?

All these are very valid questions and ones which we agonised over.   The short answer, is yes, it did work.  It got rid of his seizures from his damaged hemisphere, and although he has experienced seizures since the surgery, his quality of life has greatly improved, as he is no longer battling with an uncontrolled hemisphere.  His ‘good’ hemisphere is now taking the leaps and bounds it so rightly deserves, to allow him to thrive, grow and develop, cognitively, physically and emotionally.

We have seen great leaps in his development and when your little seven year old who for so long has been described as non-verbal – says SH*T – in the RIGHT context, you can be sure there were high-fives all round!

I can only imagine what the next 12 months will bring, and we thank you for taking an interest in the life of our boy who lives with HHE Syndrome.  As his family, we are so  #SoBlessed to have him remind us what is truly important in life.  Unfortunately, as life so often does, the white noise of everything else can often drown out the simple yet important moments, that are right in front of us.  Like, how many chicken nuggets can you eat before you actually start to cluck like a chicken?

Apparently, it is a lot! It was his road to recovery, led by a trial of chicken nuggets.  Onwards and upwards my friends (with some detours along the way), onwards and upwards!

It could be worse.

Four words most parents of children with disabilities get fed up of hearing.

With every right, too.

‘It could be worse’

Who decides for us what is enough, what we need and what we should be grateful for?

I only had to prove in the past 7 years, repeating myself over and over again, that my son lives with a rare condition that has seen him endure one of the rarest brain operations there is.  I had to prove this to get the help he needed.

We only had to watch him suffer countless seizures over many years to finally come to the conclusion that we had no option but to hand him over to a surgeon to perform the surgery.

But yes, it could be worse.

We only had to separate our family over the years, between splitting our time between hospital and home, and forgoing many other opportunities to bond as a family, like weekends away, that resulted in an emergency hospital trip.  We lived on high alert and still do, with watching him and evaluating his health at crucial times.

But yes, it could be worse.

As parents, we’ve watched our other children endure heartache and pain that no child should have to, as they wonder if their sibling will come back home, when their sibling will ‘get better’ and how long will mum and dad be away for this time.

As siblings, we don’t want to burden our mum and dad with our worries, because we see they have enough of their own, so we push our feelings down until they rise again and consume us.  As a child we start to develop our own anxiety issues because of this.   We don’t really know what to say, because no one asks us.

But yes, it could be worse.

However, we are forever grateful that we can continue to share our story with those who want to listen, and for those that aren’t interested in our story, we start to move in different circles.

We hear and see people around us complain of trivial matters, that seem so pointless to us when you have nothing else to occupy your mind other than one’s own ego.  To not see the value of giving what you have, rather than comparing what you have.

Yes, it could be worse.

We find our children present to us ways in which their challenges bend and stretch our own imaginations to help them reach their full potential.  We find a joy in the simple things in life, that may not seem flash and exciting but instead invite warmth and comfort.

We watch as others pass through the years with countless tales of competition, feelings of self doubt and try to find comfort in material objects to make up for the lack of real depth that they are truly seeking.

So yes, it could be worse.

We watch with wonder as our children are growing and exploring the world in a most mysterious way that we want to be part of.

We feel that people who miss this opportunity nor appreciate the gift that our children give to us are in fact the ones missing out.  We feel like the most fortunate ones that are able to bear witness to this extraordinary gift.

So yes, I guess it could be worse.

They day we divorced from epilepsy

The day of the divorce was a beautiful day in Brisbane.  The sky was blue and cloudless. The sun was shining bright and the city had a slight buzz as it was beginning to wake up to start its busy day.

As we walked across to the hospital, we had a feeling of anticipation, for what we had been waiting for, for so long, was finally here.  The day we divorced ourselves from epilepsy and the day he was to have his life changing surgery.

We donned ourselves in white gowns, with our hair pieces at the ready.  The surgeon came in to tell us he was about to change our boy’s life forever and assured us the greatest result would be the one he was working towards.  However, like everything in life, there are no guarantees.

As we waited for hours, while our son underwent his brain surgery, we wondered what outcome we could dare to imagine would await him.

Would he be walking within weeks, talking and would there be a slow but progressive road to recovery?

The days were slow as we came to realise that there was a bit of getting used to this life without the intense epilepsy we had experienced previously.  And just like any breakdown of a relationship, we had to adjust to this new way of life.

He woke up in ICU – talking – he said ‘mum, dad, car’ – he was not happy sir to be in the place where he was. We were so freaking happy, our little boy woke up TALKING!!

He hasn’t stopped talking since, new words each and every day – the latest – over 12 months since surgery – being “No Worries”.

He was walking within a week, we just put some chips on the other side of the room to entice him (it worked!)

We haven’t had a completely smooth break-up (does anyone!), and epilepsy has resurfaced on the ‘good side of the brain’, however, it’s just there in the background reminding us that it’s still apart of our life and to accept it, because the worst IS over.    The damage from the condition has been done and IS over.

Now we learn how to life with it.  We take his lead of the recovery which has seen him go from strength to strength, despite epilepsy still resurfacing.

For the best part – we did divorce from epilepsy on that day – the anxiety, the insanely high dose of medications – are all a thing of the past.  The epilepsy we have now, seems to be managable with meds and although like an old constant reminder, that whether we like it or not, is a part of his life, and ours.