What a wonderful time of the year!

People are such a**holes.

I was going to give this a different title, but I thought – if the shoes fits?

It’s that time of year when people turn into assholes, (or see them turn into a bigger asshole than what they have been throughout the year).

The past 2 weeks has seen me attending both of Danger’s sisters dance rehearsals.  OMG.  AND WE WONDER WHY OUR KIDS ARE TURNING INTO ASSHOLES.  Please.  Why do some parents behave this way?  Shouting at their kids to get their costume on?  Yelling at their kids because ‘look, you always do this!’  A young dance assistant shrieked at me ‘No Parents Allowed, No Parents Allowed!’.  It’s a bloody rehearsal in the local hall.  Not backstage on Broadway!  I was helping my daughter who cannot dress herself in a tutu because, well she is 6 and IT’S A TUTU!  Another parent LITERALLY hip and shouldered me out the way to get a bobby pin and a pair of Nanna’s, yes NANNA’s (sorry Mum, not you!) bowled me out the way to get to the coffee cart.  I kid you not.

Now flip this, the same dance school with special needs children, would see a very different group of people.  Calm.  Still excitable, but not anxious-ridden.  No silly clown makeup, sensory issues of course, would put a stop to that.  Children being children, parents enjoying the excited atmosphere rather than a tense and anxious one.  Parents helping parents.  I’m not bragging or boasting that it would be more enjoyable, but well, yes it would.

I can’t tell you the times I have wanted to say to some people, do you have any idea what an asshole you look/sound like right now?  But then I would feel like a bigger asshole.

I don’t mean to brag (yes I do) but being mum to Danger is not only rewarding but grounds me.  I cannot believe the crap that goes on with people when their only problem is finding a bobby bin.  Or maybe it’s deeper than that.  We always hear to treat people with kindness, we never know what they might be going through.  Such crap.  I’ve seen, and I think we can all agree on something for once, that sometimes people are just assholes.

People can be rude, ignorant and selfish.  They don’t believe in stopping to help anyone else, for fear it will slow them down to reach their end goal.  Which for the purpose of this post is the SAME BLOODY DANCE HALL WE ARE ALL GOING TO ANYWAY!

I almost threw up in my mouth when I heard some parents boasting about how long it took them to do their child’s makeup.  I know, I know, now I sound like a bitter asshole, but I can’t help it.  It’s such CRAP.  YOUR KID LOOKS LIKE A CLOWN, OR WORSE.

Where is the joy of the practice, the performance and the love of dance?  It’s not within the parents, that’s for sure.

Dance Season has brought out the worst in a lot of people, including me.  I can’t stand the bullshit, when I know how some of Danger’s little friends are really hurting at the moment, and in hospital because of the unfairness that life can often dish out.

Oh to dance, what a joy and blessing!

It seems that despite every Tom, Dick and Harry saying they know someone with a disability, when they meet Danger and that ‘he looks really good’, just proves that it doesn’t really mean Jack.  So does that mean, in turn, you know by association, what it’s like to have a child with a disability?  So what.  I know someone too.  I know lots of people.  I know lots of parents with children with aspergers, autism, cancer survivors, Duchenne muscular dystrophy, intellectual disability, cerebral palsy but I still wouldn’t have a clue what living with their child’s condition is like.

All I know, is yes, we are all struggling, but some have a much rockier path than others.  Some don’t have a roof over their heads, some are too sick to dance.  But if your child is dancing in a show, than be thankful that they are able to enjoy that.  Don’t stress them out with your adult asshole ways, please.

But what would I know?  I’m just an asshole too!

 

Recently we headed down to a SNUG  (Special Needs Unlimited Group) Family Retreat at Lake Macquarie, NSW.  It was to celebrate Danger’s surgery and it was our first family getaway since what has seemed like forever!  We were accepted into the retreat program earlier in the year, after filliing out a bit of paperwork etc etc!

SNUG runs several times throughout the year and is supported by the Steve Waugh Foundation for Rare Disease, in conjunction with the Newcastle University.

We decided to break up our drive by stopping in Coffs Harbour for the night.  It was our first long drive with all the kids, and particularly as we hadn’t done this before, we didn’t want to jinx ourselves!  We even managed to stop in a lovely country pub where we all SAT AT A TABLE and ATE DINNER!  It was pretty surreal as previously, we could only go to places which were common to Danger, otherwise anything out of his comfort zone, we would have had a very different experience.

I think it’s hard to understand what it’s like for a family like ours, when you aren’t living a similar life.  And that is fine.  I don’t think it’s possible to understand, nor explain, what it’s like to know that to go out and grab a meal somewhere different is a really hard thing to do when you have children who do not understand social ques, behaviours, have sensory issues, have multiple challenges, including brain injuries, can’t physically sit on a chair for long periods due to muscle control, or lack of muscle control, just to name a few!

But the thing is, for the first time EVER, we were able to do this and had a great hour before it was time to go!

We arrived late in the afternoon at the retreat and met a beautiful family who were from Melbourne.  Later that night, we were joined by another family, also from Melbourne!

We had a great couple of days being able to do things with our new friends. as well as our families, that we just wouldn’t have had the opportunity to do otherwise.  We went ice skating – where we were able to take the kids on the ice rink in a wheelchair.  Danger also had a go of skating himself, after he saw his big sister do it!

We had a great music therapy session where the 5 of us had our own music therapist. Katrina and Bryce have never been to music therapy before and were a little bit too cool for school at the start.  I said to them ‘just wait, this is what the twins have done for a number of years, and it is so great.. you have to experience it first before you judge it!’  Afterwards, they were beaming.  They had a ball!

We were able to do a ropes course, archery and go on walks by the lake.  The rains came in so we weren’t able to do any water based activities, but next time there is the option of swimming, sailing and canoeing!

The organisers and volunteers at the SNUG retreat were fantastic and so accommodating.  We were home away from home and we all just made the most of our time there.

It is hard to meet other families in settings like these, as a lot of the time, you meet through hospitals, school networks or early intervention networks.  It was nice to be able to chat in a beautiful setting about life in general.  People assume you are just there talking about your kids all the time!  It’s not the case at all!  You strike up conversations about all sorts of stuff but most of all, it’s the support we get from one another.

Even though our backgrounds are all different – one thing ties us all together.  All our kids lead challenging and complicated lives due to their conditions.  It’s not typical development, it’s not a typical life.  It’s a different life for sure but it’s very much a rewarding life.  We often see things that others don’t always see when rushing through the days.

We are, in a way, forced to slow down, because despite the therapies and the appointments – our kids are still kids.  They want to experience all the things in life, that many others do.  Typical kids, like my eldest, generally do things very quickly and move onto the next milestone and so and so on.  Before you’ve even realised, the training wheels are off on their bike and they are flying down the driveway, leaving you far behind, and that’s ok!

What’s also ok, is their sibling, who is still learning to ride a bike, whilst having the challenges of hemiplegia and CP, and needs a bit of extra help from mum or dad to help steer and keep them moving forward.  Even though they are all developing at different rates, and hitting different milestones at different times, it’s all about progressing and learning.

You want to know what else ties special needs families together?  They have a wicked sense of humour.  But what happens at camp, stays at camp, so I can’t disclose too much about that!

We hope to meet at the next camp again next year for our reunion and even get a few other families along for the ride too!

 

 

Big Rigs Article

For those of you that may have missed it – here is the article in BIG RIGS magazine:

 

https://m.bigrigs.com.au/news/there-for-them-just-like-family/3217657/

 

 

Wow, what a difference 3 months make!

To think that Danger had his op just 3 months ago, and has been seizure free for that time, still feels very surreal to me.  I have little moments, where my anxiety creeps up, squeezes my heart and sits there!  I am experiencing the bodily reaction to anxiety but my rational head tells me, there are no more seizures and why would there be – they have been disconnected, to reek havoc no more!

A few times, Danger has slept in HIS OWN BED!  Oh my, that was very exciting – for anyone who knows that when your child lives with seizures, rarely is a good night sleep ever had!  Danger went to sleep in his own bed and stayed there all night!  I crept in the next morning, my heart momentarily stopped as the anxiety crept up again, and squeezed my heart, as I tiptoed into his room.  I froze.  He was breathing, regularly and there was nothing to see here, so move along!  Flashbacks of him all those years ago, were replaced instead with him sleeping pbigban.jpgeacefully in his own bed.

I look at how far he has come in this short time and just feel very thankful that for Danger, he has been so very fortunate to be granted this second lease of life.  His recovery, his condition and his spirit, has been given a boost of some kind of magical super power,that makes him just want to grasp life by the balls!

They say that life starts outside your comfort zone.

I guess everyone’s comfort zone is relative to their situation?  Our comfort zone – in a warped way – was preparing our son for surgery  (and ourselves) that may or may not have left him with more deficits, then before.  So far, the biggest deficient has been his vision loss.  The other losses are very minimal as he continues to build on strengths all the time.

Reading about others that have gone through this surgery too and seeing how far they have gone, is truly mind-blowing.  It keeps spurring me on that it is OK to feel an abundance of HOPE!

There really is hope in one hemi 🙂 

 

Sound bites of happiness

Mr Danger’s feed back from school has been nothing short of positivity, really there is so much doom and gloom at times, that a cheeky little fellow who has undergone such radical surgery, has for what it seems, beat epilepsy and is thriving since his surgery!

I want my blog to be a place of spreading hope and awareness. I’m not a bullshitter though. I will tell you when it gets tough, like I’ve done in the past.

We have a new life (more of that later!) but I’m still very much on my anti-anxiety meds. I am trying to breathe more, and adapt to this new way of living. I’m still in shock of not having my dad around. He was a huge, and will always be, a huge important part of my life. I went to him for advice (how do you empty a pool?!), debates and just general chit chat. He was my buddy. I miss him and my heart hurts.

I don’t care if people roll their eyes, (their deal, not mine) I loved him and he made me proud. I drove him crazy and vice versa – you know, Papa Don’t Preach?!

I allow myself to grieve because if I don’t, it manifests into something much worse. Almost like living a double life.

It is hard for Danger and Jaz E to express themselves. Jaz thinks he’s at the old house, until I gently remind her he’s not. Mr Danger points at buses and says ‘Poppa’ (he remembers well that he was a bus driver in his later years).

I get sick of people implying ‘move on’. It’s a process and I’m going to take all the time I need.

And just like my kids, they need the time too.

Life is short enough and flies by so very quickly, moving on happens regardless because that is life. We make the choice each day to get up and move along.

So it brings me full circle to what this post is about.

The fact that I have had such lovely letters come from his school regarding his ability to concentrate more, be happily involved in the class, makes my heart just that bit more happy.

And having a happy heart is good for me.

*as I wrote this, a butterfly was dancing at the window 🙂

What I wished the doctors had told me when they confirmed Danger’s diagnosis of HHE Syndrome

I love Danger’s Doctors – we have known his Paed, Neurologist and Physiotherapist for most of Danger’s life.

The thing is, when we were first told of Mr D’s condition – we were mortified.  We grieved for the loss of the life we had imagined for him.  If only we were told of the greatness that we would find in life, because of him, we may have been able to focus more clearly.

This is what would have been great to have been told at the beginning:-

  • Yes, your son has HHE Syndrome and even though it is rare, remember you have options – medications, diets and possible surgery.
  • Surgery seems terrifying and it is.  But there are other families who have walked this path before you, so please be aware that you can talk to others who have been through this.
  • Your son, despite his condition is amazing, because look how far he has come in this short time.  You have to remember that we are discovering more about the human brain all the time.  Nothing is impossible.
  • No one life is the same, including your son’s.  It may look different on the outside but in the family unit, it is about love, trust and hope – the essentials of any family – you have this; hold onto it.
  • Don’t get caught up in the hype that surrounds kids and milestones.  Your son is re-writing these pages, in his own way.
  • Epilepsy is complicated and people will tell you all sorts of misinformed sound bites, to try and downplay the condition.  It is not simple.  It is very complicated and you do have the right to be all consumed by it. You are trying to protect your child from this.
  • He will surprise us all – you just wait and see!

Now that his seizures are gone, we can see the true potential that he has.  I think when you are a parent, you are so close to your child, you almost cannot see this, as you are so fearful of the unknown.  When you are just trying to get through a day and you’ve lost count of the seizures he has had, and the behaviour is out of control, and you are at your wits end because there is absolutely nothing you can do, but take another bite or punch because he is so frightened, you question yourself as a parent and if you can go through another day like this.

But you do, you get up and face the next day, and so on.  You do it for him, for your family.

Although there are never any guarantees, the one certainty is – this IS happening and you have to make choices and decisions you don’t have full control over.  This seems almost surreal on the surface of the world we live in, where image and status seems to reign importance.

It doesn’t.  It’s bullshit.  What’s important is people, the core of people and essentially what they are made up of.

Danger is Love and we Love Danger.

 

Living on the GC has its perks.  We certainly aren’t the centre of the universe by any means, and we are still considered ‘rural’ by some standards – ridiculous, I know! Have you seen the skyscrapers?!

Anyway, a lot of our ‘therapy’ is done outdoors with Danger.  We have a wonderful team of therapists helping Mikey strive to be the best he can following his surgery.  We have found a lot his therapy, since returning home, has been everyday stuff – walking on the beach, swimming, horseriding (hippotherapy) and riding his bike.

Mikey D had only undergone therapy 2 weeks prior to when his rehab surgery begun in hospital and he was OVER IT.  He was over people interrupting him during his Peppa Pig Marathon and Chicken Nuggets Gorge Fest.  When you have a dietician tell you if you don’t eat all the chicken nuggets you can, that they are going to stick another nasogastric tube up your schnoz, then you better eat!

We had a bit of a show-down with the Rehab Dr – who was lovely, but again didn’t know us or Mikey.

Picture this – We had Mikey strapped in his stroller, Peppa on the iPad and Mr D was chewing on a nugget.  The backs were packed, we had folded up the god-awful couch/bed and we were ready to leave!

The Doctor was a little concerned that we were going so soon and after giving our reasons as to why we needed to get Danger back home – including the fact he was about to eat the hospital out of nuggets!, she reluctantly rang her superior, who said, let them go, the kitchen can’t cope!

We went back to hospital only a couple of weeks ago to check in with rehab.  They were amazed at the comeback Mikey has made, with not only movement, but communication, speech and overall functionality.

We are very fortunate that he has responded so well to his daily routine of bus, school, car, park and beach.  These things may seem very simple, but they are part of a routine that he feels confident within.  This allows his growth.

Of course, there are times, when we have to push him out of his comfort zone – and we do.  I feel, as well as Bryce though, that as time goes on, the most important thing for us, is to see the cheeky, happy confident little boy we have enjoy the experiences that he is able to – just like any kid.

He will have his challenges but life isn’t a race, that’s what the motor track is for!

Well this was a big bloody week!

Mikey Danger and his partner in crime, Jaz E turned 6! It only seemed like 12 months ago they were 5.

The pair are just about to enter the last term of grade prep, both have tried super hard this year with everything they’ve turned their hand to, and ohhh yeah, Mikey D had a bit of surgery 😉

It is quite bloody amazing what the human body can do when faced with huge challenges, not only can it achieve, it can overcome and adapt also.  It helps if you have youth on your side too at times, or maybe it’s just Danger’s attitude,  he’s not allowing anything to stop him now!

They were more settled this week, we watched Charlottes Web only 47 times and the way he asks for the movie is so sweet, I just can’t resist, plus it’s not Peppa.  He moooo’s and when I say ‘charlottes web?’ He then oinks!

It’s my favourite conversation so far 😉

 

 

 

 

 

 

 

What’s wrong with him?!

Yep, people still use these exact words ‘excuse me but what’s wrong with him?’

Shortly after Danger got home from hospital, we had Aunty Emma up from Melbourne helping us – doing the school run, cooking the dinners and keeping the wine glasses full 😉

I was front row with Danger at the dolphin show at SeaWorld, and Aunty Em was sitting behind us when the lady next to her – smiled and said “Excuse me but what’s wrong with him?’

Now I didn’t get the whole of the conversation (that would be eaves dropping!) but I know that Em is very diplomatic and answered in a way that I wouldn’t have been able to do so at that time!  The lady was satisfied with the answer along the lines of – ‘well, he used to have epilepsy, however he’s just had surgery and now he no longer has it’.

It is amazing that kids can have this type of surgegy and bounce back and thrive when they face a future without seizures.  Unfortunately, the simple words of “what’s wrong with him?” formulates that because he is somewhat different – what, THIS scar?!, that something is wrong.

Of course, living with half a brain does invite some challenges that are quite obvious to the eye, he doesn’t have the co-ordination or verbal abilites of a typical child, but why should he, after what he’s been through?!  However, in this case, less is more, because living with a full brain had dire consequences.

Danger is on a different level, and that’s great!  I keep banging on that we are all unique but until we start to be loud and proud about the differences between one another.. it’s just another divide when we use questions like ‘what’s wrong with him?’

So instead, I invite you to look at it this way.  Instead of ‘What’s wrong with him’ – you could try:

  1. I see he has a pretty decent scar there – I see he must’ve battled Batman and won!
  2. Cool scar! Do you mind me asking what the surgery was for?
  3. Cool scar!  He has obviously had some challenges, but look at him now enjoying the show!

Some would say it’s not a big deal, that maybe I’m just making a mountain out of a molehill. However, I think it’s still important that if you do have a voice, that you try and use it wisely, try for the positive, not the negative.  Try to invite positivity and open yourself up to learning something new.

 

Exciting news!

Loving Danger! has a YouTube channel

Loving Danger! YouTube

We have no content as yet (I’m trying to work that bit out!) but all the vids of Danger doing his stuff will be on here.  I hope to write a research paper one day on my amazing son(!)

I am also trying to keep myself busy gearing up to Dad’s 1 year anniversary of his leaving us, it sucks really because he was one of Mikey D’s biggest supporters, especially when it came to the surgery.  I know he’s watching xx

I did do some other vids today but unfortunately I had my finger over the mic and the camera upside down – YouTube Extraordinaire, I am not 😉

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