The Wonder of Wonder!

I finally watched the movie ‘Wonder’ the other day with my mum. I just loved it and in so many ways, I feel this movie really got it right. It was an insight into a family’s life of living with a rare condition and with the associated issues that this kind of life brings. For me, I felt it struck a great correlation between what you see on the movie screen and real life.

It explored many topics relatable to living as a special needs family. The story was about a little boy – August ‘Auggie’ living with a rare facial deformity. It focuses on the family dynamics; the bullying that arose when Auggie joined a mainstream school and the ultimate friendships that were formed by other kids and adults, once they truly opened their hearts and minds in accepting Auggie for who he was as a person. It showed a family, living their life, just like many any other families but with a very different set of challenges.

It went through the main characters and gave a spin on how their world was affected with having Auggie in their lives.

The big sister could’ve been Danger’s older sister! Feeling that she never wanted to ask for help, to be an additional strain on her parents. No matter how much she felt she was being overlooked she always did the right thing by her brother as she had the understanding and compassion that he needed help differently to her. She was able to push aside her very real and valid feelings of resentment by always choosing kindness towards her younger brother.

No matter how people may have felt in the immediate circle of Auggie, that they were perhaps somehow being overlooked or not appreciated enough, whether it was the sibling relationship, or the relationship between the mum and dad, all the characters were able to put aside those feelings because they had compassion and insight to see something bigger.

And this is the lightbulb moment that I have had for myself this year!

Despite my own internal battle with how I may feel that I can’t be there in the way I would like to as a wife, friend, daughter or mother, it is due to something bigger than myself. Sometimes, we have to stop and realise it’s not about us at all. And if you are lucky, the people that surround you, will appreciate and understand the fact that it’s not about you at all, but something bigger that cannot be measured in any form.

It is simply pushing our own ego aside to help someone who needs our help more. Someone who through no choosing of their own, is vulnerable due to their personal set of circumstances.

Mikey Danger, although don’t be fooled by his middle name(!), is vulnerable along with many of his little friends at school. They are in a secure, gated school because I can’t even imagine him going to a mainstream school – 2 seconds without watching him and he’d be off like a shot! And it really only takes a couple of seconds.

Simple routine procedures like a trip to the dentist means paperwork the size of War and Peace due to his complex medical condition.
**Funny story – I couldn’t get Danger into an appointment until the new year. Bryce gets on the phone and calls me back 2 minutes later and says ‘it’s done, I rang and said my son has half a brain, you have to help him prior to Christmas otherwise we will all be suffering!’ Talk about impact! The stars were aligned and right away Danger and Dad were travelling up to Brisbane for a pre-surgery appointment! Doctors and staff listen intently when you explain your son is living with half a brain (and given the fact normal brain development and function is supposed to be made of 2 hemispheres, you tend to create impact!) Even the doctors cannot predict that a simply GA may go astray. It’s very rare, but it still has to be considered.

So even though Danger is more vulnerable than say his twin sister, his presence and personality IS strong and forceful! Just like ‘Auggie’. With the right supports, and the right people around him, he can achieve anything. When people are willing to push aside their own egos to help these little people grow into adults who are very much part of our communities, is a true gift.

We as a family have been very fortunate this year to have a lot of family and friends that have pushed aside their own lives to stop and help Danger achieve all that he can be.  From both of our mums helping within our home, pre and post surgery, to our own siblings – Danger’s Aunty (Bryce’s sister) and Uncle (my brother) flying from Melbourne to help us (even when my brother’s wife was pregnant with their own baby!).

It is an ongoing process and it will never stop. It will change and evolve over time, but it won’t ever stop.

Families who have children with additional needs/special needs and/or associated disabilities never take for granted the village that they have around them. Whether a small village, a global village or a bit of both. I like to think we have a bit both which is why I feel the support from family and friends near and far is equally beneficial to us in different ways. The joy of being able to ‘facetime’ with our family is so great for Mikey as he can see and recognise who his family are, near and far, he is beginning to make a greater connection to how he fits in to this big crazy world. We have our own little family but we too are part of something bigger.

And to acknowledge and understand that we are part of something bigger than our own selves, is a sure fire way to grow as a person!

All I want for Christmas is …

my two front teeth... a clear EEG for Mr Danger!

It’s been a massive year, and thankyou for all those that continue to read our Blog and join us on this journey rollercoaster ride!

I think it’s safe to say that 2017 has been our biggest year yet!

Mr Danger and his twin Jaz E began their first year of schooling in Oz – Prep, and Kat finished up her second last year in Primary School.  The twins had very different experiences through prep this year – some negative but mostly positive.  Mikey absolutely thrived at school and pretty much every day of school was a joy for him, in so far as him accessing what he needed to learn with some beautiful teachers (the seizures at school weren’t great!).  Jaz had a rough start to her schooling life, but we hope that will turn around as we get to the bottom of what she needs in the way of therapy and helping those understand her, for her best to thrive.

In any case, Prep was a massive learning curve for all of us!

Mr Danger had his much anticipated and long awaited hemispherectomy surgery in July this year.  His 2 hemispheres were disconnected with the abnormal hemisphere, still in his head(!)  This type of hemispherectomy surgery is called a ‘functional hemispherectomy’.  His follow-ups with the surgeon and neurologist were quite astonishing.  It is a very surreal moment when you put your absolute faith and trust into the doctors that are dedicated to their work of helping children with catastrophic epilepsies.  We cannot thank them enough and I think the smiles on their faces in Mikey’s post-op follow-ups was enough for us to know how happy they were to see that they had truly given a little boy his life back!

We are still on cloud 9 about that one, and will be for some time!

The other big event this year, was making it through my dad’s one year anniversary of his passing.  God know’s how my mum, brother and myself did it.  I guess for me, I focused on the kids and took it one day at a time.  It is still very hard as time goes on, time sure isn’t a healer in this case.  Danger asks about his Poppy daily and we talk about him all the time.  Mikey’s expressive language has come on in leaps and bounds since surgery, and the love for his beloved Poppy, is expressed aptly.

As a family, we have experienced extreme highs and lows this year, but I think we are coming to an even space now, where things are being fine-tuned to balance out the bullshit other stuff!

I am hoping that 2018 brings our family more peace with living a life seizure free and being able to enjoy all that it entails!  It is always bitter-sweet however, because when you are catapulted into this life (my favourite term for special needs parenting!) your circle starts to change and evolve as you meet others in similar territory.  Unfortunately, not all of us have happy second-chances and we are reminded daily how very fortunate and ‘lucky’ we are.

I read this quote the other day, which summed it up beautifully between the meaning of sympathy and empathy.  I do believe that is why many special needs parents feel differently towards their children and because of the uncommon life we are living, we feel differently about things.  We know all to well, how quickly healthy babies/kids lives can change in a second.  It has happened to us.

It is just the way it is, it is something that is learnt.  No matter how hard you try, you cannot imagine what life would be like with a child with a disability, until you are living it.  It is a different life and that is ok.  Because I have finally understood that to be Mikey’s mum is a privledge and something I never take for granted.  It is not to say we don’t have bad days, we all do – we are all human, but there is an understanding in our family, that Mikey needs extra help and will need it for the rest of his life.

Apart from when it comes to motorbikes as he’s got that!

We wish you all a great Christmas with your families – with much love and peace 🙂

The Wiltons
xxxx

sympathy-is-easy-you-have-sympathy-for-starving-children-swatting-5358903

 

 

 

The Time IS Now.

THE TIME IS NOW.

Imagine, as soon as you give birth, your baby is whisked away, and not only are you are on a different floor in the hospital, you can’t hold your baby for days.  No one told you about this.

Imagine, feeling so alone, that to ask for help, paralyses you with fear because you are even more afraid of the ‘not coping’ tag associated when we do ask for help.

Imagine, you pluck up the courage to ask for help but no one answers.  No phone calls, emails or text responses – no family, friends, health workers to support you in this foreign situation you are in.

Imagine, not knowing the path that you are now faced with, because you didn’t plan for this.  This was out of your control.  This just happened.

Imagine, being told that your child ‘has a very high chance’ that they won’t meet any of their milestones.

Imagine, battling with the local school board to gain a place for your child’s education, appropriate for their needs.

Imagine, your child being expelled due to ‘bad’ behaviour.

Imagine, people coming and going from your home constantly.  Therapists, doctors, social workers, support workers.  Imagine having these ‘extra’ people in your home during the most intense times of the day – even when you and your partner aren’t speaking to each other.

Imagine, a medical professional rolling their eyes at you because they are questioning your parenting skills.

Imagine, your family or friends doing the same.

Imagine, being suggested to that ‘it’s all in your head, you are over exaggerating or that your child will grow out of it’.

Imagine, because all the above is very true behind the closed doors of many in our Australian special needs community.

Now imagine this.

Imagine, being in the same room as your baby and being able to stay with them for as long as you like.

Imagine, you are not alone.

Imagine, family, friends and health professionals listening to you and not asking you to justify the reasons behind what you are saying.

Imagine, there are others who have walked a similar path before you.

Imagine, being supported by a group of parents who get this life.

Imagine, your child being supported in an education setting appropriate for their needs, in which they have the opportunity to flourish and grow.  Misbehaviour is a sign that action is needed to help the child, not punish.

Imagine, living in a society and having access to appropriate supports for both your child and your family.

Imagine it.

THE TIME HAS COME – THE TIME IS NOW.

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!

 

SNUG Retreat – What’s it all about?

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!

 

 

3 months post surgery and seizure free!

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.

 

This post is brought to you by: A Peppa Pig Marathon and Chicken Nuggets Gorge-Fest!

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!