Thursday, March 11, 2010

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

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

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