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 😉