Behind the SmileDial

Welcome to the club,

Welcome to the club, the club nobody asked to join the parent to a kid that has a special need (a diferent type of perfect) club. There are no secret handshakes, no joining fee and everybody is welcome so welcome.

If you have just heard about this club then most likely you have just found out that you eligible to enter, you have just found out you are going to have a kid with a disability or illness that will change everything for you, your family and of course your child.
If you have become eligible without knowing you will be no doubt be caught in a whirlwind of activity, your child may be in intensive care maybe in room one (where the most fragile kids begin their journeys) or maybe at room 5 (the “departure lounge where you are almost ready to go home). You will have doctors coming to see you to talk about your child so you know what is going on, this seldom works as you are struggling to hold on let alone try to understand the words and terms they use. You will get visits from social workers, priests, nurses, family and friends but none of them can make this place you are in feel ok, it is ok to feel this way.
Everything has changed, everything.
I began my journey like you have, although every journey is different in many ways the fundamentals are the same for all us parents in this club. You have to rethink everything and try and find some stable footing in a place where there is very little stable ground. You will be facing emotions that will wash over you in waves so strong you cannot stand up and you want to run and scream. You will be angry, scared, lonely, confused and lost and every one of these emotions will continue to wash over you, today tomorrow and always. You will get used to these things, you will learn to control these feelings and you will find stable ground, eventually.
Membership to this club requires a moment in time where you stand by and watch everything you expected fade away. You will need to rethink everything and start a plan on how to best get through this, you will get through this one way or another, you have no choice. You will find strength you never dreamt you had, you will do this. Breath.
None of these things are important now as you will have a lifetime to come to terms with these things. Stop for a moment and breath. This is the road you are on. It will be ok. Breath and face each minute at a time, you will live by minutes in the beginning, then hours, then days and eventually you will have time to look beyond, that time is not now, breath. Your baby may be in a little plastic box attached to machines, wires going in, coming out and you will be watching them throuh the plastic aching to hold them. Like everything that time will come, you will have “skin on skin” time when you can whisper stories into your childs ear, stroke their skin and fall in love with the amazing human you have created.

They will tell you what to expect, what your child may or may not have, what they may or may not be able to do and in some cases if they may or may not live. You will have many conversations like these, today tomorrow and forever, you will also learn with time that those experts are often wrong. Statistics are broken and children excell even when others believe they never will.
Wish upon as many stars as you need, the stars are endless.
Cry, cry as much as you need to it is ok. Scream and be angry as much as you need to, it is ok. Find people who have been where you are now maybe a week ago or many years. Only they will truely appreciate what you are feeling, nobody can possibly comprehend what you are feeling and facing, welcome to the club. I have been a member of the club for 3.5 years now, I still recall the day I became eligible to join like it was yesterday. I remember the smell of the rooms, the noises of the machines, the feeling of reaching into the incubator to hold my daughters tiny hand, I recall the moment the doctors told me my daughter was a different type of perfect (he used another term “brain damaged”) and I recall feeling so very alone.
You are not alone on this journey, there are thousands of us in the club already. Each of us knows everything you are feeling we feel it in our souls because the feelings will always remain. The journey is long but there are amazing things to discover along the way, you will find joy that others will never experience. You will be ok, breath just breath. Get past the next minute, one at a time.
Welcome to the club, you are not alone.

Kelly “Boy” Dugan
Founder SmileDial NZ INC (The Club)

It seems wanky to post this but it is an importnat part of the journey this blog is about. Congratulations

The regional judges of the Kiwibank Local Heroes Category as part of the New Zealander of the Year Awards 2014 are proud to recognise the contribution you are making a positive difference to the lives of others by rewarding you with a Local Hero Medal!

Over 230 nominations were made in this category and over 130 medals will be awarded to worthy recipients such as yourself at special public events held throughout New Zealand later this month.

We hope you, your family, colleagues and supporters will be able to attend the presentation closest to you as below:

Date: Wednesday 27th November, 2013

Time: 5.30pm Refreshments / 6.00pm Welcome & Medal Presentations

Venue: Legends Lounge, Addington, Christchurch

Light refreshments will be served from 5.30pm with the presentation commencing at 6pm.

Please RSVP by email or free phone 0508 692 927. When you RSVP can you please inform us of any family or friends that may wish to attend the ceremony with you as numbers are limited.

All Local Heroes who will be awarded a regional medal are currently being considered by our national category judging panel for the Kiwibank Local Hero of the Year 2014. The top ten semi-finalists will be announced later in December and if this is yourself, you will be notified. The winner will be revealed at a very prestigious gala presentation event at the Langham Hotel in Auckland on the 26^th February 2014.

If you have any queries please don’t hesitate to contact me.

Kind regards

It was a long time ago now, that you left me

I recall a warm summer breeze

As I sat on your bed, stroking your head

As you looked into me

Your beautiful face in age still such grace

I held your hand tight, that warm summer night

Until you said it was time to leave

You said I love you for the very last time

With your very last breath

You smiled and left

 

I have been here waiting such a long time, until I see you again

In another place, I will touch your face

And feel your kiss once again

Sometimes I smell your perfume

Sometimes I hear you call

No one believes me, this silly old fool

 

Our children are grown now, with children of their own

Nothing here but memories that always linger on

I talk to you every night my love

My hand where your warmth used to be

On the cold side of the bed, here next to me

I am asked sometimes how are you?, a simple term often used as a greeting to strangers as common as hello or good morning. Often this question is rhetorical, no reply required, wanted or expected and often an “ok, how are you?” is the standard reply. What if I am not ok?, do you really want to hear that and if I do say this will you care?, maybe you will just pass me my cigarettes and move to the next customer, “How are you today?”, “Good thanks, how are you?”

Sometimes I am not ok, sometimes I am far from it (hence buying a packet of cigarettes which I gave up last Friday, again). How could you understand this, what could you possibly say that would make me feel better?, nothing. Because of this I stick to the standard meet and greet procedure, answer your question with the same question, give me my cigarettes have a nice day.

I will then light up a ciggy, draw deep to ensure the nicotine reaches the ever dwindling parts of my lungs that work properly and have a five minute break. In this five minutes I will try and find some peace, a moment of calm and re gather myself. I am aware that as soon as I finish the smoke I will get back in my car and drive back home to the carnage that is my life.

Often I will hear my daughter screaming as I pull up the driveway to our home, this means she is still having a bad day. I will enter the house and my partner will be doing something, anything to stop her screaming, standing her up, laying her down, turning on the tv, turning off the tv, giving her something to eat, singing, not singing ANYTHING, what is the formula that will make her stop today?.

There is no hi honey I am home, no hug and kiss no how was your day (Ok, how was yours), there is no time for such intimaces in our home when my daughter is having a bad day. My daughter cannot help it, I am sure she would rather be normal and not be screaming, I am sure it is harder for her than it is for us. She has Cerebal Palsy and for the last two and a half years I have been the parent to a child with special needs, I am “that” father, yip the thing that only happens to other people happened to my family, we are the other people.

Am I ok?, probably not even close, I am far from ok but not being ok is my new ok, this is just a new normal for me and my family. Am I dealing with it?, of course because I have to I have two choices stay or go and I would never leave my family. Do I think about sneaking out in the middle of the night never to return, yes I have thought that and how I could leave it all behind me. These thoughts are fleeting and I feel such guilt for thinking (wanting) to do it, I will hug my daughter and forget I ever had the thought.

Raising a child with a special need is awful, lets drop the PC crap and be honest. Yes there are of course wonderful moments but often these are few and very far between. Would I change things if I could?, in a heartbeat. I say I would change these things for her so she was not different and was a “normal” little girl but part of the reason is for my my arrogance and self pity would change her so my life was normal and not so bloody hard. Yes she has taught me so much, given me new perspectives and made my life better, this is what children do but I would prefer to not have learnt what she has taught me and just had a “normal” kid.

Al parents with a child with special needs has a broken heart, a heart that breaks over and over until the pieces are like grains of sand.

Let me sit here, just a moment

With my face hidden in hands

In the corner by the butterflies

In the sheen of the pale green

Corridors and walls

The machines beeps a mile away

You in your plastic box

I held your hand for the first time

You did not open your eyes

I closed mine

Tangles of wires in and out

To drugged to scream

Do you dream in false sleep?

Have to head back now

Follow the sound of machines

And eyes like mine

To the room of boxes

Before her when I thought I knew it all.

I had walked many roads until my feet hurt, or my heart hurt, or my soul hurt. I walked roads that when i reached the end I promised myself I would never walk that way again. This was a false promise, often you realise you must return to some roads to search for what you lost, the pieces of yourself that you left there on the pavement. If you are lucky you may find these “missing pieces” but most often they are gone, lost forever.

Some roads you want to walk again, those roads that were so perfect so very beautiful, the roads of first kisses, first loves or summers that were endless and laughter was a simple as taking a breath. You can try to find these roads and try and walk them again but you will find that there is nothing there anymore, all you will find is your name carved into a tree confessing your love for a girl who is also now gone and a breeze that does not feel as warm on your face as you recalled. The best thing you can do is acknowledge you have walked there and carry the memories close in you. Put these memories so deep in your heart and soul that they will never be lost or left behind on another pavement on another road. Some roads make you forget everything that really matters, some roads will empty your pockets of everything that brought you joy.

Sometimes we choose our roads but often this is another bonus of youth before your journey has already begun to take shape. As we grow our roads become more destined than chosen and this is directly connected to the roads you have chosen already. You can always try and keep your eyes on the horizon, like a fisherman watching for a storm trying to see what is ahead. If you do this you run the risk of not seeing the bumps ahead and you may stumble and fall, sometimes you can spend so much time watching the horizon you miss the ground beneath your feet. Sometimes you will never see what is coming, it will hit you with such force you will stumble, you will fall and you will be knocked so far off the road you will never find it again, you will be lost.

Being lost on a road you have never been to, never ever wanted or expected to walk is the lonliest road. Even if there are others on the road with you the road is still yours to walk alone. Each step will bring you closer to something, if this is something good or something bad is unknown but you must keep walking, this is your road. The footprints of others will serve as no guide, their decisions will not help you make yours but their council will provide options and provide some support.

One day your journey will end, before it does you may be lucky enough to have time to reflect. You will re walk the roads in your mind, you will cry at those you left to soon and grieve for the roads wanted but never taken. All you can hope is that the roads you did take bought you to a destination where you can sit and walk no more. A place where those you love also come to visit on their own journeys. It is only at the end of your journey will you truely know who has been walking it with you.

Your feedback is appreciated, please feel free to drop me a line, say hello or just let e know you are there. 

[email protected]

 

I recently wrote a something called “My Daughters a Different Type of Perfect” (you can find it on this blog), a bunch of words that talked about my life as the dad to a kid with special needs (a different type of perfect). The story was published on a New Zealand internet  news site, then it was published in a New Zealand newspaper and before I knew it the story had been published all over the world and I had gone viral (the good viral not an itchy type on ya “bits’). I received phone calls from radio stations wanting to interview me and everything went crazy. Since then I have had three other pieces released to the public through different media channels these are all in this blog), wow I was just have a moan and it took off.

Write a book people said, a book?. I do  not know how to write a book, where to start, where to end and how much about me do I include? Would anyone really want to hear my story before and after I became a dad to a kid with special needs?. It is an interesting story I think, I have had a rather colourful life and I have a fair few good tales to be woven but who cares?. Ok, so plan B write a blog, if people read my stuff awesome and if they don’t then that is ok as well. This blog has no record of who is coming and going, maybe two people are reading this or maybe two zillion wow two zillion is lots). This creates a double edged sword, am I writing and no one cares meaning the blog is doing nothing or is it popular and people are getting some joy from my words?. The fact I do not know is a good and thing but not knowing means it does not matter either way. I would hate to have a garage full of boxes full of books full of my writing that no one bought, this way it does not matter and my ego remains intact.

So what is this blog about. First of all it is about me and my journey that brings me to my current destination, the CEO and Founder of a charity called SmileDial New Zealand Incorporated, a charity that supports Kiwi families raising kids with special needs by providing once in a lifetime opportunities or support that provides a long term benefit to the child or family. That is my elevator pitch, a in a nut shell description of what my charity does. if the building is higher than two floors my  elevator pitch gets longer.

This blog will be where I can share my journey being the a parent to a child with special needs, perhaps my honest no bulls**t approach will help others see it is ok to feel the way us parents do. I do not like political correctness, sometimes you just have to say what needs to be said and strip away the sugar coating. I also want to share my journey that lead me here, this position where people turn to me for advise or support. Once you hear more of my journey you will also wonder how I ended up here at this destination when my journey could have lead to many other places. Times in my life where I trod on very thin ice and often by the skin of my teeth I made it through and began the next chapter in my life. The point of this is to show that anybody can do good things to change the world, anybody can no matter who they are or where they came from.

Now don’t get me wrong I have never been proper in trouble with the police naughty, I have never hurt anybody, stolen from someone and generally I have been a pretty stand up guy that would help others. The journey was more of being far from any road that would lead anywhere worthwhile, the times in my life when I floated with no goal (except the next night) and removed myself from normal society for long periods of time, sometimes years. I recently caught up with an old friend from one such stage in my life and he told me most of my friends from then were dead, victims of addictions that inevitably destroyed them. I wonder if it wasn’t for a morning phone call when I rang my mum and asked her to fly me home (after realising I was on a slippery slope) if I would be one of them, most likely I would. I miss these friends, in all of our anti social habits and behaviours they were some of the most caring and beautiful people I have ever met.

I was not a drug addict. I say that after reading the last paragraph and I wanted to be clear until I can explain with more detail  later in this blog.

I have played characters all my life, I was Kelly the popular guy at school, Kelly the depressed guy flown to Melbourne to be with family that could (and did) help me, I was Kelly the yuppie suit salesman, Kelly the model, Kelly the bar slut, Stumpy the tourism account manager, Kelly the NZ business development manager for a worldwide brand, Kelly the salesman and now Kelly Boy the CEO of a charity. Somewhere in all these characters I was inside somewhere, the fundamental me was there but often it was  more fun to be a character in my own life. I look back and think I was a method actor in my own life. Now I am Kelly Boy and the closest I have ever been to being me, stripping back all the bull shit and leaving just me, I struggle with this guy sometimes.

So this blog will be a journey for me, you are welcome to come along and maybe it will be interesting, maybe funny and sometimes no doubt harrowing. I will pull no punches and not apologise for the content or my terrible spelling, lack of correct grammer and my penchant for using bad language (I believe bad language is ok in context). I sill wonder how much of my story to tell, how will this affect my charity and peoples perceptions of me?. But then again the whole point is to show where I came from, my journey. I can only hope that the stories will be entertaining and if I am to be judged it will be on my merit as a human being that has always strived to be good to others and be a good person myself.

Ok that is the explanation of what this blog is and will be. I hope that who ever (If anyone) who reads this will enjoy it.

This is my Journey and my Destination.

Kelly Patrick Michael Dugan

Let’s get started………,