Survivor guilt, a new life and standing by the ones you love.

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/ 11 March 2010

How to start?  What to write?  After the last post I am stuck for words and almost feel like anything I write would be so banal and pointless in light of the pain my friends are still in after the loss of Luke that anything I write feels empty.

Nothing I write will bring him back and nothing I write will ease their pain and nothing I write will improve the situation for Luke’s parents or any of us with children on the Autism Spectrum who live in fear that no matter what we do, we cannot keep our children safe.  So what do I write? 

Well today I wrote a special story for another little boy and that helped me get back into the swing of raising awareness for our kids.  Maybe more awareness will keep our children safe in some ways.  I don’t really know.  It felt great for me but I could not shake the feeling it will never be enough....

What I do know is that whilst the rest of us are finding ourselves laughing at a joke again occasionally or getting on with our everyday tasks like dropping the kids at school or preschool, chatting on the phone with a friend.  Some of us are finding the next fight we have to fight for our kids and one of my friends is in the thick of doing just that today with the department of education who have not acted quickly enough to help her or her son who has an inadequate play area for his breaks at school.  Actually inadequate is not nearly a good enough description of this disgusting situation but I digress.  See here for more on that situation...

However, today I feel a bit empty.  Not as passionate as I usually am about all things ASD related.

Is this survivor guilt?  There I said it.  There is a guilt that I‘m feeling that my kids are fine.  They are alive and well and as safe as I can make them in my 24/7 fight against the danger they may not have the “appropriate” development to sense naturally.  I also feel grateful my kids are fine.  That feels a bit guilty.

My friend is picking out her dress for tomorrow’s funeral and I laughed at my kids today numerous times.  I am watching them eat their dinner and I even got a bit annoyed today when they challenged me about a minor power struggle involving a trampoline and time to come inside to wash their hands and get ready for the aforementioned dinner......

I caught myself in my frustrated temptation to yell and lose my patience and I felt like I could never yell at them again.  What if something happened to them and I’d yelled at them over a stupid trampoline?

At what stage is ok for everyone to resume their lives?  It seems offensive to me on the eve of this beautiful child’s memorial to even think about yelling about a trampoline but I’m not sure when it becomes ok to go on and pick up your life.  My friend is still heartbroken.  Everyone is still heartbroken.  We all have our chance to mourn this heartbreak tomorrow but for some of us, we get to go home with closure.

For Fiona and Tom and Luke’s siblings...... Well what is closure for them?  They live in their self proclaimed  and real life nightmare for as long as it takes.  I urge those who think the grief stops and the support ends after the funeral to think about Tom and Fiona who will be living this for many many many days, weeks, months and years to come.  Who will replay the events over and over.  I know it’s hard to put yourself in that place and so hard to go there..... BUT!  Every parent of a child with Autism or any special need that means your child has no sense of danger has put themselves here.  We have all been there in our minds and we don’t like it. 

Funerals are not the end.  I think maybe the funeral is just the beginning.  The beginning of the new life for those left behind.  The beginning of a life for my friend that means no early mornings to organise schools, buses, HUGE lunchboxes full of gluten free food just especially picked out for Lukey with his big appetite, no organising of therapy appointments for Lukey after school, no buses to pick him up from school, no thinking about locking every cupboard, door and window in the house, no respite worker for the week, no intense caring role and a massive shift in her reality that has completely changed the goal posts of her life.

Will she EVER go on a holiday and not feel guilty for enjoying it?  Will she ever feel joy at her surviving children’s achievements and smile again?  Will this woman ever be able to walk in her front door, pour herself a coffee or maybe even a red wine and NOT feel anguish, sadness and devastation? 

Oh how I hope so.  I really really do.  This woman is a woman of such abundant life, fun and energy it seems criminal she will be anything but her old self one day soon.

It will take time.  Perhaps some will not have the stamina to endure her pain alongside her and some will drop off at her new beginning or even her middle of her new life without Luke.

I promise, my friend, that I will endure it.  I will embrace it and I am not the only one.  I have been lucky enough to meet her other friends from other worlds this week in a week of sorrow and I can already see the ones who will stand with us to help her stand up on her own and take a step.  A step into that new life.  The new beginning.  A life without Luke seems so unfair.  But a life without Luke that honours Luke seems so fitting.

We love you Fiona.  We stand by you and Tom. 

Tonight, we think of you, we send strength to you and we will all go to bed dreaming of you smiling one day again. 

Thank you for your gift of strength, faith and most of all Luke. 

Love, Chantelle. xoxo

Broken hearts and beautiful boys. RIP Luke Selwyn.

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/ 5 March 2010


The hardest post I have ever done.  It's definitely this one.  Whilst everyone else is sitting down to dinner tonight, getting their kids ready for bed or just watching the news, my friend is grieving a loss too great to ever imagine.  Her world has stopped and her heart has broken as has mine and anyone else who knew the special little boy we are all mourning with heavy hearts tonight.

Nearly two years ago, I walked into an early intervention playgroup with the suspicion that my own child had Autism and I can tell you, the last place I wanted to be was in the entry way of that room that held that playgroup.

However.....  the first person I met that day was a lady called Fiona.  Her son was Luke and Luke was on the Autism Spectrum too.  I sat down next to this woman and I cried.  I howled in a way that rivaled any Hollywood Academy award winning actress receiving an Oscar.  I was broken, devastated and absolutely bereft that my family was facing this thing called Autism.

This incredibly open and incredibly down to earth woman offered a non judgmental shoulder and ear and then made me laugh.  Can I take this opportunity to say that not many people on the planet could have made me laugh in that moment but Fiona did.  You know, I cannot even remember the exact comment but I can remember the feeling and I vowed from that moment that I would never forget the time this incredible woman made me laugh in a moment that I would really have expected to be sobbing.

So I was lucky enough to make friends with Fiona, Tom and all of Luke's family including Jess and Jared his beloved sister and brother.  My son, J had a bond with Luke's brother, Jared that included cars, fights, cars, bites, cars and being incredibly bad influences on each other but they did have a bond and Fiona and I laughed over many things including the cars, fights, bites and more bloody cars.....

Around the time I decided to start writing special stories for special kids I asked Fiona if I could write a story for Luke as he was starting school soon so I figured his teachers might need some help understanding him and I needed the practice.  I thought writing about kids I knew would be a great start to help me write for others.

Fiona agreed and I wrote Luke's Story.  Luke was the first little soul I wrote a special story for aside from my own son, J.

I always knew I'd hold a special spot in my heart for Luke.  My first real My Special Story. Fiona's was my first real testimonial that my stories might be helpful for special kids.

This morning I awoke to the most horrific news I could have ever heard.  I received a text message asking me if I knew the little boy who drowned in my local area the night before.  See here. I was groggy and still half asleep.  What boy? What are they talking about?  I was very confused and wondered what was going on....

My beautiful sister phoned me and delivered terrible terrible news.  She told me my friend had lost her boy.  She told me Luke Selwyn had wandered off late yesterday afternoon and after a massive police search had been found drowned in the dam of a nearby property over 7 hours later.

To say I was distraught does not come close to describing the feeling in my gut, my brain and my heart.  I howled like the day I sat near Fiona and poured out the grief that my own boy was facing a diagnosis of this mysterious Autism.......  I sat today and sobbed.  I sobbed for my friend.  My eyes are barely open as I type from the tears I have shed today for this beautiful soul I was privelleged enough to know and love.

My own son J who has Autism showed real and genuine concern for my tears and even wiped them as they streamed down my face today.  Both of my boys, knew in their hearts Mummy was very very sad.  I am sure they do not understand the actual events but they definitely understood their mother was nursing a broken heart on behalf of her friend who's heart must surely be in a million tiny pieces and who's pain is unimaginable and makes my tears flow freely again now.

Luke loved nature, he loved his family and he loved his stick collection.  He even had a special box for his treasured sticks. Luke loved animals including his dogs Ben and Bonnie (both heroes who tried to save Luke from the dam).  He loved big squishy, tight hugs, wrestling with Ben the labrador, big jumps on his trampoline and would gently take you by the hand to find a dvd he wanted to watch if you visited the family home.

Luke had started to talk and had a few words.  He said "book" one morning out of the blue and gave everyone who knew him a reason to do a cartwheel of joy for this amazing achievement that he said some words!

Anyone who has met a child with Autism knows how complicated they are and that with all the good, with all the wisdom they hold in their complex natures and all of the joy they give they also hold mystery, difficulty and social complications but today, I would like only to celebrate the joy of Luke.  The joy of what he brought to this world and the friendship he fostered between his mum and me.

To Fiona and Tom, my heart will be forever changed, broken, filled up and joyous that I knew your boy.

To everyone else, I ask you to think about this deliciously pure soul we lost and whatever your beliefs are today please remember that this little boy is an angel forever more who is loved and missed by all of us.

RIP Luke Selwyn.