Danger in Big Rigs!

 

Thanks to the support of Bryce’s work, he was able to do a presentation following on from Mikey’s surgery about the roller coaster ride we have been on as a family.

He was able to highlight and bring awareness to the great work that the Hemispherectomy Foundation of Australia are continually doing to help families like ours.

The story was published in Big Rigs – ‘The Voice of the Transport Industry’.

Story here:  BIGRIGS

 

 

8 weeks seizure free and still driving me nuts!

It’s great to know that some things don’t change!

My little Danger Man always keeps me on my toes. Never a dull moment, never a time to slack off, unless we are watching a bit of Peppa, and all for the joy of spending time with a little Danger that has defied the odds and proved that miracles can happen!

8 weeks ago today, Mikey Danger underwent his procedure to disconnect his 2 hemispheres – a Hemispherectomy.   Prior to surgery, he was a go-getter, always asking for the next thing to do – car, car, park, park bus, bus (school), ball, ball (his physiotherapist!) etc.

Now post surgery, it is much the same – ball, ball, car, car, beach, beach!!

So today we went to the beach with friends.  AND we stayed there for 1 whole hour!  It was amazing.  I watched him go off into the sea with his surf board, bobbing along with his bare little bum shining bright white!

He used both of his hands to steady himself, and only a few times I had to wade in to bring him closer to shore!

Prior to surgery, the banshee mother screaming STOP MIKEY! – would have been dismissed and he would have carried on anyway.  This time, he turned, gave me a cheeky smile, and watched me wade in to grab him!

To be able to head to the beach, and not worry about him having a seizure that although lasts only seconds, can have dire consequences when you are in the water, was freedom.  Today, was about total freedom.  I was finally able to watch from the sidelines.

It was quite stressful though, so now I’m swimming in wine 🙂

 

Total Fog Has Lifted!

I CAN SEE CLEARLY NOW THE RAIN HAS GONE!

I might be getting a little ahead of myself, but since Danger’s return to home, things have really become easier in the respect of not having to be so paranoid about seizures.

To be honest, it will be in the back of our minds til his next EEG (4 days before Christmas!) BUT we have also started the weaning process, which makes it very real, that he could not only be SEIZURE free but MEDICINE free too!

He’s had to be on AEDs for pretty much all of his life, since he was 10 months old, so this is a another huge feat to celebrate!  He may need some tweaks along the way, with other issues that could very much pop up due to post-surgery complications to do with how his brain now deals with hormones and other stuff, but really, we have a wonderful community that we can go to should that appear (and really, it most likely will, due to the complexities of his surgery, but hey we are realists, and that’s ok!)

We have noticed since the weaning process – which began about 2 weeks ago, his vocab is improving every day.  I asked him what coloured icey-pole he wanted – blue or red – he said RED.   He has NEVER said that word before, and he knew what red was!

I know it may sound such a simple thing, something we don’t think anything of in our day to day life, but for Danger, it is amazing to see him transition from a once-foggy boy to a bright happy child.

I CAN SEE CLEARLY NOW THE RAIN HAS GONE
I CAN SEE ALL OBSTACLES IN MY WAY
IT’S GONNA BE A BRIGHT, BRIGHT, SUN SHINEY DAY 🙂

 

 

 

What I wished people knew about special schools

We have been so very fortunate about Danger’s early return to school post-surgery.  We really had anticipated him being in hospital much longer, but to our surprise and delight (and to the doctors!) he was healthy enough to return earlier.

With him missing nearly most of Term 3 this year, it gave me a bit of space to think about how much we value the support we have received from his school, during this process for him and our family as a whole.

Before Danger started special education this year, I was fearful of the unexpected.  I had only experienced mainstream before and to me that was hard enough.  Being a kid, in a busy school environment, is hard.  School, for a lot of us, has its awkard moments and then we go onto adulthood with work and not much changes!  It’s the relationships we form, that make the difference.

Here are a few insights I have gained this year:-

  1. There is nothing to be fearful of
    Are you in a big corporate work place in the city, or closer to home, perhaps a smaller sized work place?  Maybe you work outside and don’t have an office at all or maybe you work from home?  Just as we make choices with our work places, depending on our needs, so should be the education for our children.

    I had dreams leading up to the start of the twins prep year, that they would go hand in hand off to school on their first day, together.  But they didn’t and that became all too apparent as time went on that a mainstream school would not suit Danger’s needs.  His twin sister would be ok, despite her own learning difficulties.  However, we knew Danger’s setting would need to be greatly adapted for him to thrive.

  2. You will find smaller classes
    I had a chat with several schools about their special ed department prior to Danger starting school to get a feel of the support he would receive.  It was clear in all the schools I spoke with, that Mikey would not receive the support that he could access at his smaller special school. We are talking about large classes vs smaller classes.

    His twin is in a larger class with a diversity of children, typical, on the spectrum and physical and/or intellectual impairments, an example is Cerebral Palsy.   Some schools can cater to these needs greatly and I have friends who love their school and it fits for their family.  I just knew it wasn’t the right fit for us and for Danger.

  3. There is plenty of diversity in a special school
    Once we had made our decision, we found that Danger’s school had plenty of diversity.  Yes, all the children have challenges but there is just as much diversity in a special school, as to what you will find in any school.  It’s just the diversity is geared towards a group of children who need extra attention due to higher demands with their learning abilities.
  4. Everyone is so friendly!
    Each time I go to Danger’s school, my heart swells.  It is a beautifully, caring environment where respect is a core value.   Parents actually smile at each other(!), teachers are open with communication.  If there is an issue, it is dealt with straight away.
    Despite that there are kids dealing with chronic illness and life threatening conditions, the teachers and volunteers ensure a safe, respectful and fun environment for our kids to learn in.
  5. Learning may look different to the naked eye, but it’s still learning
    Just because Danger goes to a specialised educational setting for higher needs children, does NOT make his learning any less important than his twin who attends mainstream.
    That is like comparing Private and State School, Small Business to Big Business – each has their own pros and cons.  Do you criticise someone based on the size of their work place?  No.
    Is their money that they earn, a different colour on pay day?  No.
    Education is the same – it’s still learning.
  6. Do our kids ‘miss out’ by going to a special school?
    I will confidently say NO.  We live in a society that would have you believe if you are not part of the status quo, you are somewhat ‘missing out’?  Danger attends school 5 days a week for a portion of the day.  In the other hours, we attend sporting activities, parties, barbeques, visit the theme parks (perks of the Gold Coast!) spend time with family and friends.  Not much different to anyone else, really!  A mix of people is what Danger has in school and outside of school.

    **He does love his trampolining, music, swimming and art therapy, which he does weekly at school.  We don’t think he’s ‘missing out’!

  7. Will Danger ever go to a mainstream school?
    I have been asked this a few time this year and I think at this point in time, no.  However, as with our working environments, things change.  One year you could be working in a small environment, the next restructure could take place and you could be looking at a very different landscape.

    There is change with everything in life.  But if something is working well, why would we change it?  He loves it!

The Dark Side to Life.

sadThere is a dark side to life.  We are all fully aware of that.  How can we not be?  Our feeds are flooded with images and words that tell us so – radio and tv depict these images also.

We know that we all experience highs and lows through our lives – and some of us witness horrific things.  Those in the front line of certain vocations that require a human spirit so strong, that it wouldn’t break when faced with these images.  And what about the people who are actually experiencing them?  They are the survivors and the fighters.

There is nothing more worse than human (and animal) suffering. If you read between the lines of the ‘perfect’ images that also saturate our feeds, the Insta-sham and Fake-books, you can sometimes see a person’s vulnerability, if you’re willing to scratch the surface.

On the flip side however, a lot of good can come from spreading awareness of important issues.  Death is a huge part of life yet we rarely speak about it.  I don’t know why, but Danger constantly asks for his Poppy – and I mean everyday.  He knows that he’s not here, that he’s up in the ‘stars’.  It saddens me that dad was taken from us, and that is where my heartbreak lies, just beneath the surface.

We all have something, that if you were to scratch the surface, the dark side would appear and so would the cracks.  It is important to acknowledge this because if not, eventually you will crack.  This is what makes us human.

There is a lot of people out there, who face immense battles and deserve to be celebrated. They go on to live full and rich lives, despite their circumstances.  If we stop and look at these people, who help us along the way to put our own lives into perspective, then maybe we could all breathe a bit more easier, not so laden with anxiety?

And those that lose their battle, end up having their life severely altered or taken away prematurely by disease?  They deserve to be celebrated also, remembered with love, for their time that we were able to share with them and the positive impact they had on the people around them.  Let the people who want to share these stories, be heard.  Mikey might have challenges in many areas, however emotional intelligence is not a challenge for him.  He’s probably one of the most in-tuned little humans I’ve ever met!

Let your dark side show if you need to, it’s not a bad thing.

Thanks for reading 🙂

 

Some changes are for the better!

While our family adjusts to this new way of life (more about that in my upcoming post!), I have given the website a new look with some exciting news to come… please keep sharing the page and liking, commenting so we can reach more people who may have been hit with a rare diagnosis.

The more we share, the more we can care about those that need help accessing resources to live their best life possible!

Onwards and upwards, and keep riding the rollercoaster of life!

Kel 🙂 xx

 

The post I didn’t want to jinx!

This is the very post that I have wanted to write for a few weeks now but I was scared of jinxing it!

Dynamite Danger has not only had his hemispherectomy, he has also continued to recover in leaps and bounds!

Mikey started back at school part time last week, and this week he is back to school full time.

It has been an amazing time, the hospital feels like a lifetime ago and when I see friends whose children are undergoing this incredible life changing surgery,  I can hardly begin our Mikey has gone through it, in just under 6 weeks ago!

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I will keep you all posted on his progress and hope to get back to writing more regularly, particularly for the Source Kids Blog section.

Happy Days – Spring is here and we all have a spring in our step 🙂

A letter from a father to his son.

mikey1-e1505386845999.png

Son.
I cannot fix you or make it go away
I see the frustration in your eyes I know what you want to say
I cannot explain why or how you became this way
I cannot take it back, I wish I could every day

I cannot stop the tears from rolling down your face
When your Daddy takes you back to hospital, I know you hate that place
I wish I was smarter or knew that what I am doing is right, when the mask goes on and I say goodnight

When Dr’s tell me “We have tried everything there is no other way”
I cannot make you the same, just ordinary, plain, everyday
I will be there for you, the moment you wake
When the drugs wear off and you think “Dad for fucks sake”

What have you done to me and why am I here?
I trusted you
This is my biggest fear

No matter what I will always be by your side
It’s my job and I will do it with pride
Through the anger, frustration and pain
I will help you be you, not simply same same

As you face the painful crawl back out of this labyrinth
I will be your safety your centre your strength
If it helped I would make a deal with death
I would give you everything even my last breath

My heart is forever fractured inside for the pain you will feel
I will guide you through your life that to you must be so surreal
One sentence is all that is needed to express how I feel
You are my Son and I love you, that much I know is real.

It is a very strange feeling when you are standing at the crossroads after a long journey of decision making to go down the road less travelled.

Why would you even choose it?  Easy.  Because you want a better life for your child than they currently have due to their condition.

In our case, it is for our son Mikey Danger who is about to undergo Hemispherectomy Surgery to treat his intractable epilepsy he’s been living with since he was 1 years old.  He and his twin, are also about to turn 6 soon!

He has spent the first 5 years of his life fighting.  We have spent the first 5 years of his life fighting for him.  Fighting for answers, inclusion, acceptance and support.

The hardest thing?  Watching him fight continuously for things that should come naturally. Communication, movement, learning.  All things we take for granted when we aren’t living with  a brain injury or a condition that jeopardise these things.

As this chapter closes and we leave behind the uncertainty of living in limbo land, watching and waiting for progress, or in our case, no progress.  He has undergone many pre-surgery tests since the beginning of May and these tests did bring up emotions not felt within me for quite some time. Mainly, Anger.

Anger that this is an option that we have had to consider.  No parent should have to make such a hard decision.  We want to be choosing what holiday destination we would like to go to, not this! However for us, and many other families choosing epilepsy surgery, this is our priority at this point in time and it is also our life.  It is all-consuming.

We have a date set for his surgery in a couple of weeks time.  One chapter is beginning to close and another will begin.

My overly positive nature could be that I am on the breach of insanity.  I flip between being hopeful and terrified!

We have been so fortunate this year to have attended the very first Hemispherectomy Conference held on the Gold Coast (just so happens to be a stone throws from where we live!) and we have met the incredibly brave families with their amazing children.  This gave us the much needed hope we have been searching for these past years.

We are under no illusion that the next few months are going to be hard.  In fact, I am in the brace position, waiting to crash.  To try and counteract this, I am ‘carbing up’ on chocolate, rice, pasta, more chocolate and vitamins.  I throw some veggies and fruit in there too (like grapes, pulped and poured into a glass!)

I will update over on Facebook leading up and including, the post surgery weeks.  Bye for now and see you on the other side!

Thank you all for the love and support 🙂

Kelly (aka Danger’s Mum) xo

 

Asking for respite.  It’s a funny thing when your respite circumstances are those concerning a child with a disability.  You are forced to recognise that despite others telling you “how do you cope with it all, I could never do that”, that in fact it has beat you.  Only a few people will actually see the truth behind your exhausted smile and tired eyes and gently recommend an alternative or a different type of structure, and if that fails, a bottle of wine to share with a friend who has a genuine concern with ears switched to ON!

Lack of check-ins whether be by email, phone, text, in person, snap chat or whatever else we have to make our lives so much simpler, just reinstates that people are busy with their own issues and we simply all have something to worry about and our own issues going on.

As well as trying to shed some light on our situation to enlighten others, and to reach out to others in similar circumstances, I am also a huge advocate on mental health issues – a cause very close to my heart.

One or two people cannot manage it alone if they want to have some sort of life that resembles living, rather than just surviving and getting through the days.

Take our current situation of trying to get a bike for Mikey D. We have waited absolutely years to be able to purchase a satisfactory bike for his additional physical needs impaired from his Cerebral Palsy.  He is physically strong despite his hemiplegia, however the epilepsy and the permanent damage it has caused to his developing brain, means that it can take a long time for him to process certain things.

Like Safety.  We need a bike with a parent handle to have some control – Danger would take off in a heart beat onto a street, because that is just what he wants to do.  He doesn’t do it to be defiant, he does it because he wants to go fast.  He doesn’t have the ability to process the possible consequences of his behaviour.

We live with this, day in day out.  It is a thrill as we never know what the day will bring and he’s always up for an adventure!  But the flip side?  At 40 years of age, I am in constant fight or flight mode, trying to be 2 steps ahead.  It doesn’t always work because life isn’t supposed to be constant fight/flight.  And a side note – 40 is not the new 20, that’s a lie!

img_3495-e1499124993739.jpgWhen you are in this state for too long, over time you become mentally and physically fatigued.  It’s not a question of just ‘go for a run’ you’ll feel better.  You don’t have any reserves left when your top priority is your child with special needs/additional needs/disability – whatever, all the words mean the same.

The long term reality for us is that we have to find a way to deal with the constant pressure we are under as our son navigates the world around him with less boundaries than other children of his age, due to his limitations – and yes they are limitations – because he has had severe brain damage at an early age.

It does not mean that as time goes on things cannot improve. In fact, I am sure they will.  The limitations he has will be replaced with new ways of doing things.  I am a keen advocate for inclusion and I practice what I preach.  We get out there, when we can as a family, even if it means we don’t last as long  – we don’t do ‘days at a time’ we do hours, sometimes minutes.  This is what we do.

For society to appreciate families like ours and for companies, and organisers of events – this is what we need:-

  • Understand we are not your typical family.  We don’t do days at a time, we do hours at a time, sometimes minutes.
  • We need safe places for when meltdowns occur, we need ‘break out’ areas for our sensory seeking kiddies and their parents.
  • We need offers of genuine help, not pitiful glances.  For example – Can I carry your bags while you see to your child?
  • And remember, we are trying our best, like you, to have an enjoyable time out.  It is not cool when it ends in us feeling like we have become just another ‘attraction’ for others to comment on or put their unsolicited 2 cents worth in.

Listening to one of my favourite radio shows the other day, I heard another example of the lack of knowledge that the general public have with disability and particularly disability concerning children.  Maybe it is easier (or not) for society to understand the ageing process and disability that can be a consequence of that due to age and/or poor health.  My dear dad was verbally abused by a fellow human in a shop for being on the booze at 10am in the morning.  My dad had a brain tumour and had trouble walking.  Nice humanitarian style from his fellow human, pffffttt!

On the flip side, assuming that children like Mikey D are lazy is not cool when he’s in his oversized special needs stroller – it is weighted to carry up to 70kg, it is $700 – it is funded for special needs families, before they go down the path of purchasing a wheelchair. Please try and remember there is generally a reason behind everything you see. The simplest of all actions for us to even try and understand another in a situation different to ours, is to listen.

And maybe, just simply be kind.

 

 

 

 

 

 

 

 

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