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.

 

 

 

 

 

Ever get the feeling you are living 2 lives?

Do you ever feel that sometimes you live two lives?

I do.

Just the thought of living 2 lives is tiring.   Some days I barely feel I’m doing a good job in this one, how could I live a 2nd one?!

It’s only recently that I’ve really thought about this – that it’s like i’m in two different worlds, and it makes me feel uneasy.

Recently, making the decision to return to full time work – hit me like a tonne of bricks – it’s been a whole other level of tired that has hit me smack in the face!  It’s probably the brain strain of learning a new job, being hard on myself that learning a new job is actually quite a challenge and the fact that my memory is not as sharp as it once was.

In those first few weeks of the new job, everything that could go wrong, did!   It is hard to explain to people who don’t have a child with a disability, the impact of returning to work has had on us as a family.  And the fact that they don’t know you from a bar of soap, so anything you do say, has no perspective to it.

Stresses, modern day stresses affect us all, in one way or another.

My reality, and which I no doubt is very similar to those who have a child with a disability, is that we deal with a very different set of stresses.  I want to see more recognition of this, to support the families that are trying to change their lives for the better, and to keep these families together.

We already know that far too many families crack under the pressure and therefore, split up.  If they had better supports earlier on, would they have had a better outcome?  For some yes, and maybe for others, not so much – maybe it was never going to work and that’s ok too.

But lets start by recognising that the pressure of modern day living with a child with a disability is at a greater intensity level due to some standard every day supports – or the lack of these supports.

What do I mean by this?

You only have to go out in your local community to see families out and about.  I see families just cruising around, kids sitting out at lunch – SITTING – what IS that?!  The small things I took for granted when we were a family of 3 with a child who was developing normally with no ABI, sensory issues, disability or any other impairment, was a completely different experience to now.

Our son has half a brain due to epilepsy surgery of a rare seizure disorder.  He has visual, physical and intellectual impairments.  He is non-verbal, although does communicate.  He’s developed with all these impairments since he was a baby, so we have grown with him and he’s shown as a different way of life.  But as he grows older, it’s apparent he’s different, our family is different and that there aren’t the supports out there that scream INCLUSION!  (The buzz word of the disability world and a bandwagon term for mainstream – sorry, not sorry for saying that!)

He’s such a spunky little boy and those who get to know him say the same – his differences are what make him unique.  But on the first meeting, you may think he’s ‘naughty’, ‘uncontrolled’, ‘demanding’ (yeah, but can’t all males be like that?!)   There are no adjustments made for him when we go out into our community.  We make sure we make the adjustments and have it covered (don’t be reading this and think that we have it all together – it’s taken us 7 years to get to this point!)

So getting back to my new job, it is a strain learning a new routine, new processes and procedures – pretending to be bright-eyed and bushy-tailed (more like dark eyes and coffee loaded!)  I’ve struggled more than what I imagined I would, it’s an intense environment, and although I feel I deal with pressure relatively well, I find that it can impact my energy levels, if I am having a low day (17 coffees anyone?!)

So I feel like I live 2 lives because one i’m a loving yet frustrated parent of a beautiful boy with a life changing condition, to that of someone who pretends that her life is like everyone else’s –

‘what are you doing on the weekend?’

‘Oh nothing much, just hoping my child doesn’t go missing again and I find him up the road on my neighbours motorbike in their garage!’

I am frustrated because people don’t understand, Governments don’t understand and therefore it’s a constant battle of proving what we need to function ‘normally’ as a family.  We need different things to what we needed before when we didn’t have a child with a disability.

Respite helps too, to reset ourselves – which I’ve also written about here.

It is hard to explain to people who have no experience with disability, what it’s like – and depending on the awkward level of silence you are met with (am I right?!) when you try to explain you have a child with a disability –

‘A CHILD with half a brain?  How does HE even function??’

‘Like a kickarse rockstar, really’

– it’s another area of conversation that just tires me out – the justification that my child is just as important with or without is disability.

I think that as I learn to navigate this new way of life – the balancing act is not happening at all – Work/Family Life/Disability Life – it’s all or nothing at the moment!

In time we will figure it out – we have no choice but to if we wan’t to keep our family together – it might just take another 7 years though!

The day I had a bath!

What’s so interesting about that, I hear you ask?  It’s because the bath was following a 4 hour respite package which has been long overdue (plus I had a bath just by myself, which is always rare!)

7 years we have travelled along the special needs path and like so many other families, we have just bumbled along doing the best we can, running on empty and hitting the exhaustion hump more times than I care to count.

With our respite, it’s come at a time where, we again, are undergoing transformation and change.  Oh, isn’t life always the way – it sure seems to come around in circles.  The latest change is that I’ve returned to work full time after working part time for 12 years.  To say it’s a huge adjustment is an understatement, but for the kids and us as a family – even more so.

The husband has had his own dramas too, with ending up in hospital with a staph infection and a bout of scarlet fever. During that time, we were very lucky to have my mum able to step in and help while I was able to continue to go to work, and not actually lose my job in the first few weeks that I had started, never a good look!

This respite package has been given to us by an organisation that has seen us struggle and like many others, we are still waiting for our NDIS package. In the past, accessing respite was always through an emergency means – in which case it’s a short term answer to help you out of the rock bottom you have hit. Ultimately, we want to try and avoid hitting rock bottom but we can’t always do that at times.

The respite not only helps my mum who stepped in and stepped up during the hospital stay, it also means that we can have a bit of a break while we regroup ourselves again.

The thing with special needs parenting is that while these hiccups of life intervene, life still goes on.  There are still the therapy appointments, schooling, the toileting dilemmas, the meltdowns, the communication issues, the health issues, the medications to be administered all under the watchful eye of my husband and myself.  Becoming unwell ourselves, is another pressure to our already overloaded plates.

We took off to our respite with a bit of a spring in our step.  We left our twins with the carer, while we took our eldest out for some lunch at a new shopping centre.  Nothing like a new shopping centre to get excited about (said no husband ever!)

There was live music and many people(!), and in those moments where I was siting in the busy and bustling food court, I closed my eyes and almost imagined I was in a different time.  I was back in the days, when I was young and free, at a music festival.  I was sitting in my chair, swaying to the music, with the young guy on his acoustic guitar no doubt singing while dreaming of playing to a full stadium one day, and not in a food court.  I was so lost in the moment, I was about to get a lighter (my phone) and shine it up like you do at a concert, but then realised where I was.  Instead, I put my phone away, and realised that sometimes, it’s just a little mental break from the ‘thinking and doing’ that we are programmed into when we become parents.

As a parent of both a typically developing kid and 2 kids with disabilities, I know this all too well.  It’s equally intense on both sides of the coin, but with special needs parenting, we have the added intensity of the isolation that comes from parenting children with  disabilities.  It’s not the ‘norm’ so we are always fighting; fighting the system, fighting the judgements that come our way and it’s impossible to truly understand unless you live it.

So, a little bit of respite, where I thought I was at a music festival, was just enough for me to know that I have hit the point where just a simple bit of music, could pick me up.  And that is just the kind of respite I need to keep going.

Conversations with a nonverbal child

Mikey is quite the chatterbox, yet for all intents and purposes he is still labeled ‘as non verbal’.  I guess when it comes to the technical definition of verbalisation, he is unable to express himself the way a typical person can.  Instead, he uses a combination of single words, gestures, sign language and PECs.

The other day I had a most interesting call from his school.  In that the teacher was very concerned about Mikey’s recent behaviour seeming to change in the afternoons at school.  The lashing out and being very ‘hands on’ is out of character for him.

Um well, I had to fess up to her.  ‘It wasn’t out of character – he was actually in character.  You see, he thinks he’s Batman.  He’s obsessed with Batman.  Everything is Batman.  He loves Batman!’

He breaks out his Batman moves but unfortunately he doesn’t realise the strength in his little body and the ‘lashing out’ are actually his moves which quite rightly, looks like he is going head to head with a Batman nemisis! Unfortunately, it’s another child or teacher in the playground that cops it.

My conversation with Mikey that night went something along the lines of – mate, I’m sorry to tell you but you are not Batman.  Mikey looked at me with his little furrowed brow and said ‘uhhh??’.  ‘You are Mikey and you can play Batman, but you are not Batman.  There is only one Batman’.

He seemed happy with that response.  We practiced ‘gentle hands’ and I told him about keeping hands to himself when he’s at school.  Maybe we will stick to the trikes at school instead, where you can play cars? Ok, he nodded.

The next day. I had a follow up report from the teacher, to say that our little Batman had a wonderful day playing different games, engaging as Mikey and leaving his alter ego of Batman at home!

The thing with my non-verbal little boy is that although he can’t use all the words to express himself, he can and does find other ways.  To engage with him, and others like him, takes a skill that most of us possess but don’t realise.  It is the skill of understanding that language is not the be-all and end-all.  That just because you speak the loudest, doesn’t make your right, or important.

In fact, words are over-used frequently, and most of the time are misleading.  When I slow down and engage with someone who doesn’t verbalise as much as myself, I realise that the message I receive is clear and to the point.

I don’t have to overthink it, I just need to embrace it.

Besides, Batman barely talks yet he conveys his message extremely well, doesn’t he? 😉

 

 

The little things

The other day fb popped up a photo I hadn’t seen for a while.  It was a 6 year old photo of when Mikey first became sick.  He was sitting up in his highchair with his little lopsided smile, which at the time, we thought was caused by a stroke.  He was out of ICU and had moved onto the ward for rehab.

All the memories came flooding back of the party we had been to the week before.  He was a ‘normal’ baby at that party.  He actually started crawling too!  A week later he would be fighting for his life.  It’s amazing how much we take for granted.

Even now 6 years on, I find it hard to comprehend how our lives changed instantly overnight back then.  We didn’t know it, but for whatever reason, fate had another road for Mikey to follow, and it wasn’t one of the ‘norm’.  It would be a journey of a little boy defying the odds of a seizure syndrome that was only to be managed through brain surgery.

He wasn’t going to hit any of the ‘normal typical’ milestones.  He was going to do things in his way, in his time.  He was going to teach us, that following the normal life isn’t our path – it wasn’t meant for us, it never was.  That being different is such a breath of fresh air!  Seeing the world as our boy sees it, is a fresh of breath air.  Boy is it.

Yes it’s challenging, it’s scary and it can be hard work but what human on this planet hasn’t had some life challenge that has made them feel this way?

Being different is a wonderful asset in the staid world of normalcy.  In fact, the more I discover Mikey’s way of life, and his way of doing things, not to mention the amazing little people in his life, I realise how these kids are here to teach us something.  And if we don’t start taking notice, we ‘the normals’, will miss out.

The developments that he is making through his ABI (acquired brain injury) has showed me how is neuro diversity is a gift.

I would never have thought that 6 years ago.  I felt it was a curse, that we had done something wrong, he was being punished.  There was sorrow and heartache of what we had lost.  Society told us that not living a normal life, would be a curse.

They were wrong.  It is a blessing.

Whatever challenge your ‘special child’ has, is just that – a challenge.  But it doesn’t define them.  Their personality will shine through regardless.

One day our culture may catch up to the fact that being different is a gift and that uniqueness is what occurs when something out of this world happens.  When you feel all is lost, you have reached the point of no return – then a miracle happens.  The darkness starts to lift, you start to feel hope again.  There is a breakthrough.

All you have to do is follow your child and they will show you a new way.

That’s what I see now, a new way.  And it’s pretty damn great.

Update :) Chips!

We’ve been very fortunate to go on a trip recently to celebrate Mr Danger’s surgery and the mammoth year we had as a family.

We had some great news earlier in the year from Danger’s doctor to say that he was all clear of his seizures!

Shortly after, we started to notice some changes in Danger.  He was making great gains with his speech and expression, but had started to have some different body jerks we hadn’t noticed before.  Sure enough, we jumped on Google and YouTube and saw that he was having, what looked like – Myoclonic Seizures.

A trip back to the hospital with a follow up EEG and it was confirmed, he was having abnormal brain activity on his ‘good hemisphere’ and seizures were confirmed.  Back onto a small dose of meds and so far so good, the seizures are controlled.

I guess what I learnt in this time, we had 8 months seizure free, he was going great and so was my anxiety!  Apart from this small hurdle, it’s manageable and it hasn’t slowed him down. He’s independent in that he catches the bus to and from school each day, he high 5’s all his mates when he sees them and hugs all his teachers!  He’s a very tactile little dude – it’s another way he can express himself.

As much as my anxiety crept back up to a place I felt uncomfortable with, once we had him back on meds, things started to settle again.  The best we can hope for is that he keeps going, one foot in front of the other.  It is our goal to let him live his life to the fullest.

It is tough at times to really let go of the anxiety, as the intellectual disability at times makes me wonder how as a society we can help and understand these little people better, because one day they will be grown.  I read (too much!) of where the ‘system’ lets people and families down, and I hope to God, things change and I do believe together with awareness and understanding, these changes and adjustments will be made.  It still astounds me how much staring goes on towards us when we go out.  Bryce tells me he doesn’t even notice the stares, because he simply does not give a shit what other people think.

I do think there is a real lesson there, where caring what others think and taking their discomfort personally, sets me up to fail.  If I simply didn’t give a shit, I would just enjoy the moment, anxiety wouldn’t be high and would be much more manageable.  It’s simple and something I have to work on.  I guess like everyone, I have my good days and bad days, and some days get to me more than others!

The behaviour difficulties are getting tricky to manage as he’s getting stronger.  Generally he’s pretty chilled, but there are a few things that tick him off, and like all kids, he will let you know!  The only thing with his outbursts, it is hard to reason – the intellect there is not developed – you can bribe all you like, 9 times out of 10, it won’t work.  Think a stubborn 2/3 year old – no reasoning!

But that’s ok, we can deal with that, for now and we will manage that and get the support we need as time goes on.

We are grateful each day to have him, out of hospital, living his life.  We know that very fiercely that he may not have recovered nearly as well after being set free from his bad hemisphere – and for that, we are always thankful.

Now, please pass me the chips 😉

Under Pressure – just like Freddy.

We ALL have pressures.  Every single one of us.  Our circumstances vary but we are all under ridiculous amounts of pressure.

To make money, to keep money, to buy food, to make food.  To keep on top of this, to keep on top of that.  To stay fit, to not be fat.  To be energised and not de-energised.

Our kids NEED us.  Our kids with special needs NEED us more than ever.  Mikey Danger needs his mum to be HERE, to be PRESENT and to be here for HIM.

Every week, I feel pressured.   The pressure stems from my feelings following the conversations I have with others who suggest I am not doing enough and that I should be doing more.  I should possibly try this and maybe stop that.  There are a couple of people  – therapists – who DON’T do this, and I LOVE THEM!

Why?  Because they embrace the little person in front of them as exactly the way they are and not what they could, should or need to be.

There are also teachers that do the same important thing – they accept Mikey for exactly who he is, on that day.  Whether he’s cheeky Mikey, quiet Mikey or ‘chatty’ Mikey.

There are very few people in this world who want us to be who we are.

WHY?

Because when they feed our minds with fear and doubt, and we allow this doubt to creep in, it makes them money.

When we choose carefully who to allow the privledge of working with our child, then we allow our little person to thrive as they need to.  To be exactly who they are, in their own skin.

It doesn’t mean that I stop looking.  I continue to look for other ways to do things to benefit Mikey, to help him to thrive but not to the detriment of his or my own, mental health.

  1. We keep it simple.  Two therapies a week – we change it as we go, focusing on the priority for that particular stage.  Everything else we incorporate into our daily life.
  2. Dressing/self-care – a chair in the bedroom to allow him to assist with dressing.  A stool in the bathroom to help him towards independence with brushing his teeth.
  3. As much outside time as possible – where we are in our local environment, learning about the community we live in, simply by experiencing it.

It’s different for everyone, but since his surgery, I have found that by focusing on a couple of things, instead of the mountain of things we COULD do, means that the couple of things that we do, achieves a better result.

There is no race.  Our most trusted doctors have always said the same thing – he is a child first and foremost.   You want him to enjoy what he’s doing, otherwise it’s a constant battle.

And sometimes, we need to pick our battles.

February Post for Rare Disease Day!

27655046_2084354794914319_7518656112282901298_nThis week we received the long-awaited news at Mikey Danger’s hemispherectomy post-op check-up – 7 months to the day, that we’ve been longing to here…..

You no longer need to see me –  come again in 12 months!

These were the words from our neurologist who we have been in a close relationship with for the best part of 5 years.

He has answered every question we have had via email, phone call, skype call and face to face consult. He has guided us through the most difficult decision of our life – to make the decision to disconnect our son’s 2 hemispheres for the hope of a better quality of life for him.

He was suffering seizures every single day since the age of 10months and each of his EEG’s during these 5 years, showed as abnormal.  Every medication he tried, would be short lived until another break-through of cluster seizures would inevitably lead him to an increase in dosage.  An increase in dosage that had serious side-affects for him.  Limited speech, cognitive regression, behavioural difficulties, sleep difficulties.

It is quite surreal when I speak of this experience now, I almost feel as if I’m talking about someone else.  And yet, from time to time, the anxiety of those days, creeps up on me and squeezes my heart like nothing else can do!  Fortunately for Mikey Danger he was a successful candidate for surgery due to the type of rare syndrome he had – HHE Syndrome (hemi-convulsion hemi-plegia epilepsy syndrome).

His strength was lost shortly after he had learned to crawl at 10months but was replaced with the strength of commando crawling, followed by bum shuffling, pulling himself up and eventually, walking with a limp.

All of these stages were huge at the time, and we celebrated them fiercely!  His loss of speech followed by a resurgence  8 months later after the initial seizure to his brain, and then single words slowly but surely followed.

As time ticked on, as it inevitably does, we saw some changes that were positive and others not so.  The to-ing and fro-ing of the decision making process weighed up on many factors, but one that would ultimately lead us to surgery which happened on 26 July 2017, exactly 2 months prior to his 6th birthday.

We were making a decision opting this surgical procedure, rather than waiting anymore in case a seizure were to take his life.  His risk was high as the odds were stacked against him.

This week for rare disease day, unlike previous years, we are all slightly more relaxed!

With an outcome that we could have only dreamed of, our little Danger Boy is thriving.  Living a life seizure free surrounded by people who only want the best for him, we count our lucky stars that he is able to go forward every step of each day, fearless like the little Danger Boy that he is!

A post about 2 cents worth!

Many people have commented over the years with regard to my parenting style of my son with his array of special needs.  I’ve had well meaning people tell me that I am ‘too soft’, am ‘over-protective’ and a specialist once questioned whether I was a ‘lazy parent’!  I’ve had people tell me ‘he will be fine, look at him – he looks normal!’, not even knowing the destruction his seizures at the time were doing to him, and what would eventually lead him to having his brain surgergy.   I would smile and nod, too tired to go into detail the real storm that was going on deep down in his little head.

The thing is, I know these comments were coming from a place of ‘good’, most of the time.  The problem is, when people who don’t have a child with special needs make a comment like this, it’s completely misses the mark on supporting the parent!  A point I think that even the most well-intentioned would be suprised to hear.

When you are a parent of ANY child, you are sure to receive a two cent worth opinion that you didn’t ask for along the road of this parenting gig.  No one likes to be told what they are doing wrong.  But we all like to be told what we are doing right.  It’s a set of different challenges for each and every family.

The way we support one another makes a huge difference.

When we start to acknowledge this, it takes away the competition of comparing children.  Why do we even do this?  Is it because of our out-dated educational system of standardised testing that this way of comparison is programmed into us?  With the thought of believing we must excel at all the same things?  That we must all have similar timelines?  How crazy is that?!

Some challenges in families are more common than others. 

In the case of special needs families, we have a set of common problems that are not found in other families.  Listen, and I mean really listen, to a parent of a child living with a medically complex condition – you will hear that our children don’t hit the milestones and pass the standardised tests that are found and used for typically developing children, so where does that leave us?

No matter what you see on the surface, parenting a special needs child is an intensely  different challenge than when a child is developing typically. 

When a child has a set of medical issues that interferes with his/her development, there is a team of people behind that child – paediatrician, allied health therapists, medical specialists, social care workers, support workers and so on.  It’s a pretty amazing thing to think that we live in a country whereby we have systems in place to support these little beings that teach us much more than what a result on a piece of paper, or a ‘diagnosis’ name could ever tell us.

Behind closed doors, families are reading, researching, filling out forms all in the aid of trying to make a path for their child to be able to access what is necessary for them to live a fulfilling life – the right health care, the right education, the right for a happy and supported social life and beyond the school years?  A right to be an active participant in their community whereby employment IS an option.

‘It’s tough for all parents” is a common statement we hear. 

The problem with this statement is that yes, of course, parenting is a tough gig!  No denying that.  The issue is when the families of special needs children are made to feel that they somehow don’t fit in to their community because the right supports aren’t in place, because it hasn’t been set up correctly due to lack of understanding of what these families need.

We want what you have!

Access and inclusion for our children and our families to education, parks, activities, fulfilling friendships, fulfilling employment, the list goes on! With careful planning and consideration, all the above can be achieved but there needs to be the right kind of adjustments and supports in place to achieve this.

Of course, this isn’t to overlook some of the great improvements of inclusion and adjustments which are happening all the time through different organisations pushing forward with these initatives, but there still needs to be a lot more done!

We need people to understand that it’s very much a way of life for us, and it’s not a stage that will disappear as time ticks on.  For this to happen, people need to be informed so attitudes can change! 

I hope that in 2018, we continue to see the growing acceptance of all people in our communities, with making the necessary changes to support people who don’t live a ‘standard or typical’ life.  We need to see more diversity and options in our abilities to support each and every person.

A different kind of Christmas!

We are about to experience a different kind of Christmas this year – our first Christmas without seizures!

It’s been about 5 years since when looming up to Christmas I haven’t been full of anxiety with the anticipation on whether our little Danger would be having a hospital trip, recovering from a cluster of seizures or just be too worn out from his seizures, the side-affects from the meds and the combined pure exhaustion of it all!

I am very good at masking my anxieties, I think you have to in a sort of self-preservation mode.  You have to put on a different face, when you go to work or meet friends for a drink – you have to just push that aside for a moment to be able to function at a different level, I know my life awaits when I return home!  The mask comes off when I can get home and fully relax.  A quiet cry or a quiet wine, to take the edge off whatever I have had to deal with that day.  Pushing down my own insecurities in the process.

For the first time in a long time, I have been able to really slow down and just enjoy the build up to Christmas, the excitement in his eyes for every time we are out we bump into the big man in red!

When Danger squeals ‘Ho Ho’ (his word for Santa!) it fills my heart with joy that he is truly understanding the connection of Santa, and that he is here to bring joy to children and of course, presents!  I didn’t think it would be possible, that so soon after surgery, we would be and out and about meeting different Santas and just enjoying the moment.  His cognitive connection has really amazed me these past few months and the fact his brain isn’t struggling with an obscene about of drugs in his system, as well as an abnormal hemisphere – is a sight for sore eyes!

We have kept it pretty structured this year, with returning to the Christmas Parties that we attended to last year (prior to his surgery).  The difference in attending pre and post-surgery has been pretty eye opening to say the least.

We were very fortunate to be invited to the Westfield Special Kids Christmas Breakfast both in 2016 and 2017, and as it was a local shopping centre and play area, Mikey was very familiar with the space and so were we!  It was well gated and all the volunteers remembered us from last year.  Some even had a tear in their eye when I explained to them that Mikey was now ‘post-surgery’.  They were amazed at the little boy that they could see before them.   Mikey tried to escape a couple of times, but we were onto it, as were the volunteers!

The second big Christmas party was the big Variety Christmas Party at the Brisbane Exhibition Centre.  It is a huge party with loads of families who attend from in and around Brisbane, the Gold Coast and Sunshine Coast.  It is so well thought out and everything is available.  Rides for the kids, Santa photos, animal farms, face painting, the police and their motorbikes and cars, food, drinks, presents and entertainment – you name it, it’s there!  And of course Danger’s favourite – Bat Man!  He squealed again when he saw Bat Man – and ran straight over for a hug.  Bat Man was beaming and it was just such a lovely interaction.  All the volunteers there do an amazing job with the number of families that go through their doors.  Mikey was pretty good with the noise this year, and even though he is more sensitive to noise after his surgery (a side-effect of surgery) he managed it very well.

The days following these big events have also amazed me at how he has re-adjusted.  Prior to surgery, the tiredness following these big days, would see Mikey very hard to self-regulate and ‘just be’.  He would cry for hours and just need constant cat-naps to recover.  This year, we were able to go home, and he was able to self-regulate by playing on his iPad or going under the sprinkler to cool down.

It has been a true miracle to watch the transformation of Mikey as he is being weaned off his meds and coming into his own true personality without having to constantly battle seizures with an abnormal hemisphere – really, in hindsight, that hemisphere didn’t do anything since it was damaged at 10 months, and the left hemisphere started rewiring to bring across the ‘remaining goods’ from the damaged side.

We still feel incredibly lucky that Danger’s surgery has been the saving grace for him and his epilepsy.  And even though his HHE Syndrome is a part of him, it does not own him nor does it define him.  But it has made him who he is, because of the strength he has endured to fight this insidious form of epilepsy and the agonising decision we made as his parents to proceed with this type of surgery.

To simply say, ‘you made the right choice’, feels like a platitude.  It wasn’t really a choice as such, but an opportunity to rid him of his seizures that were hampering any real further development.  It was a slow and carefully measured decision by the top paediatric neurologists in Australia – both in Melbourne and Brisbane.  Those guys don’t just flip a coin!

Danger can now experience the world in his own way with the freedom of no seizures interrupting the new connections his brain his making and developing.  That for me, is the best Christmas gift of all!