All the perfect souls

The question has perplexed theologians, philosophers and the grieving alike since time immemorial – why do the innocent die?  The question sits alongside “what is the purpose of suffering?” and “why do bad things happen to good people?”   Ageless questions without easy answers.  Xavier, and those I know through Xavier, are not the only people in my life to have left the world too soon.  A small handful of beautiful young souls within my orbit have been taken from this earth in the past two years.  People that surely karma would grace with long lives.   Sometimes it seems that Billy Joel’s, “Only the good die young”, is particularly prophetic.   Is there any sense to be made of this apparent waste?  Some profound lesson?  Some divine reason?   Or do we spend too much time, trying to find gold where only misery lies?  Why do we try to find reason in the unexplainable?  Why do we yearn for order when the world throws us into chaos?  Why must we look for the silver lining in every cloud?  Why does our Western obsession with looking for the good in everything extend into the darkest of situations?

Perhaps sometimes it’s okay just to realise something is crap without redemption.  Just utter, terrible, heart-breaking, soul-destroying crap.   When Xavier died, the words I found most comforting were – “it’s just not fair.”  No attempt to explain what happened.  No pretence around reasons and better places.  Just an acknowledgement that very often life is terribly, terribly, terribly cruel.

Of course, I have tried to look for answers.  I have spent the better part of 18 months turning the puzzle of Xavier’s death around and around in my head – a rubik’s cube that will never be solved.   There are a number of ways that I can look at his death that give me a kind of comfort.  That he is an old soul.  That he had little to learn and much to teach.  That his death had no reason but his life held a grand purpose.  That he is still here, in different ways.  Snatches at comfort – things that would bear no close scrutiny but that do not need to.  

The thing that made the most sense to me came to me late one night.   You may think me crazy, but I often have imagined conversations with Xavier in the still of the night.   Whether it’s Xavier’s soul speaking to me, or some deeper part of me that still belongs to him, it doesn’t matter.   I asked whether Xavier could see the future and give me comfort in what he saw.  The reply came that whilst living life, we have an incredibly narrow vision.  We see only what is immediately around us.  Xavier’s view was as if from an aeroplane – an expanded view of the landscape below, creating a larger and different picture from what we experience on the ground of life.  A more holistic viewpoint, removed from the minutiae of the moment.  

Perhaps when we reach the other side, we will be able to see a richer and more complete tapestry and suddenly our questions about why the perfect souls leave us, will be answered by the complete vision in front of us.

Making the rainbow connection

I am not the first loss mother to be consumed and confused by the place of a rainbow baby in her family.   This beautiful gift that I have paid the highest of prices for.    I think the crux is the confusion is this:  you learn things in grief – precious, beautiful things.  We sometimes call them the gifts of grief. But every angel mother I know would gladly give each and every one of those gifts back to hold their baby again.  There is nothing you can gain in loss that tips the balance in  favour of saying good-bye.  And then another child comes into your life.  Suddenly, there is something borne of loss that is so precious that it gives you pause to reconsider.

No one is going to knock on my door and offer my Xavier back in exchange for Elijah.  I am never going to have to make that choice.  And yet there is still guilt surrounding the presence of Elijah at the expense of Xavier’s absence.   My love for Elijah will always be tinged with a longing for Xavier.  His milestones, more so than Isaac’s, paired with wondering if Xavier’s would have looked the same, been met at the same time.  And as I am granted longer and longer with Elijah, my feelings for him intensify and evolve in a way that they never had time to with Xavier.

In the weeks following Elijah’s birth I would look at him and could not fathom how I survived the loss of Xavier.  Each feeling was intensified in those weeks – the joy, the love, the fear and the grief.  Even now, I think I could not survive if we lost Elijah.  And that thought feels traitorous – could  I survive the loss of one child over another?  Am I, in some way, choosing one son?  Loving him more?

Of course, it would be possible to fall pregnant four months after Xavier was born had he lived.   Just terribly, terribly unlikely. I was breast-feeding and two children had always been our plan.   Whilst now I look at photos and think of Xavier as missing, in a way that’s disingenuous – in reality it was never the way our family would look.

And yet, how often do our families end up the way we planned?   Those that had sworn to no children may end up with a family of six.  How many third children are born in the hopes they might be a different gender to the first two?  Accidents occur frequently.   Do the mothers in those families agonise over the children they had not initially planned on and wonder at their place in the family?  Or do they not even pause to think it over – just accept the beautiful gifts bestowed on them and the fluid shapes of family over time?

When I think about the shape of my family – my boys – this is what I picture: Two boys, one much littler than the other, their faces turned towards the sunshine.  Rays of light gently settling around them, and both of them with an understanding that this light belongs to their middle brother.

Good Mother

good mother

There is a terrific rant currently going viral around Australian social media networks celebrating all kinds of different mothers and encouraging us to stop judging others and ourselves.  Em Rusciano reminds that we are all good mothers – even if our parenting styles look different.  You can read the article here.

It made me think about the judgements we place on ourselves as bereaved mothers.  In general, the child loss community is fantastically supportive and kind.  It would be a very small minority that would judge the way another is grieving.  However, I think we often judge our own grief and the way we mother our angels.  I look at those that honour their angels through setting up projects, raising incredible amounts for their chosen charity or those that have set up their own charities and wonder if my way of mothering Xavier is adequate.   Should I be doing more for my little boy?   When my tears don’t flow as freely, and I am having several good days in a row, I wonder, “Should I not be hurting more for my precious baby?”    Yet, I have had people mention to me that they look at the creative things I do for Xavier and they wonder if they are doing enough in that space for their angel.  Others long to get to a gentler place in the grief.

Figuring out how to the best mother you can be is difficult.  Figuring out how to be the best mother to a child no longer in your arms is even more so.  We look at those around us for inspiration and sometimes come away feeling inadequate.  We put enormous strain on our already strained selves to do beautiful and wondrous things for our children.  When really, breathing each day, getting up, or deciding to just stay in bed is wondrous when you have lost a piece of your heart.  So, taking inspiration from Em’s new rules for motherhood, I wrote a set that apply to the bereaved mother.

1. Do you raise money, create, write, dream or paint in your child’s memory? – Good Mother

2. Are your tears the greatest testament to your love? – Good Mother

3. Do you get up and face the day even with your broken heart? – Good Mother

4. Do you stay in bed and cry for your lost love? – Good Mother

5. Do you embrace the things you have learned in your grief and find  peace? – Good Mother

6. Do you rage each day at the unfairness of a universe that stole your child? – Good Mother

7.  Do you love, grieve and miss them each and every day, no matter when they last were in your arms and make no apologies for doing so? – Good Mother

The hearts that surround us – educating those that support the bereaved

Within the support groups I am a part of, whether in person or online, a common topic of discussion is insensitive  comments and actions made by loved ones.  It seems every bereaved parent has at least one story (most many, many, many more) about being deeply hurt by the words, actions or inactions of someone they hold dear.

But just as there is no definitive guide book on how to handle your own grief, there is no ‘Support 101’ for friends and family to rely on.  The unfortunate fact is that it often falls to the grieving to instruct those around them on what they need.  An almost impossible task, particularly in the earlier days when  you don’t know what you need, aside from the one thing no one can give – your baby back.

Whilst it seems momentously unfair,  it is often a choice between losing friendships or being open and honest about the support needed.  Personally, I could not fathom further losses.   But I know for others, certain friendships had to be let go.

So how do you educate those around you?

  1. As callous as it sounds, work out who is worth the effort.  For me, it was all of my friends but if you have one of those people in your life who only ever take, it might be time to let them go. You have nothing left to give.
  2. Consider telling people about the positive things that remind you of your child.  Through telling people about seeing Xavier in the sunshine, they often refer to “Xavier’s sunshine” and will send me pictures of beautiful sunsets and sunrises.  It’s a way to share him and have people remember him that feels joyous.   It makes people feel comfortable about sharing in his memory and helps them realise that as much as his death makes me sad, his life makes me happy.
  3. Have a forgiving heart. People are going to say hurtful things they don’t even realise are hurtful.  Try to see the intention rather than focussing on the content.  If the intention seems pure – explain to them why what they said or did caused you pain.  Do it sooner rather than later.  There is no point in holding onto hurt and leaving your friend completely unaware of the pain they unintentionally inflicted.  If you think the intention was hurtful, see point 1.
  4. Share articles and blogs that resonate with you with your support network.  Not only are you educating your friends and family, you often feel validated – a sense of – “see, other people who have lost a child feel exactly the same”.  It helps the non-bereaved to understand that what we imagine “healthy” grief to look like and what the reality is are often very different.
  5. Realise that the person who has stayed silent may have nearly rung a dozen times, had a half-written email filled with good intentions, verged on texting and then second-guessed themselves and thought their words would bring more pain than relief.  It’s not an excuse – if that person is dear to you they need to know that silence is often the most painful of reactions.   But don’t assume their silence immediately means they don’t care or aren’t thinking of you.  The opposite is the most likely scenario.
  6. If it’s your baby’s birthday or anniversary and you want people to remember with you, let them know that in advance. For Xavier’s anniversary, I had ribbons made with his name on them and asked people to wear them. Others have asked loved ones to reflect on how their child has touched them.    If you’d rather be left alone, let people  know that too.  But please don’t get to the end of the day and feel wretched that nobody remembered your baby. Some people may have forgotten, others may have remembered and been unsure what to do and so opted for silence as the safest bet, particularly if you haven’t mentioned the day in a public way.  With the exception of close family,  I don’t expect others to have Xavier’s dates engraved on their heart as I do.
  7. Lead by example.  People are so scared of doing the wrong thing – they will look to you as an example of how you want your baby remembered.  If you talk often about your child, they will hopefully also feel comfortable to do so.   Let them know you like talking about your baby (if you do).
  8. As a bereaved parent, you sometimes ended up supporting others through their grief over your child. This isn’t okay.   This is pretty much the best advice I have ever read relating to support –  Ring Theory.   Share it.
  9. If the thought of explaining how you want to be supported to all your friends and family seems overwhelmingly daunting, enlist the help of your dearest and closest friend or family member.  Get them to help you educate those around you. This also works well when returning to the workforce.  Having a trusted colleague talk to your team mates on your behalf can help avoid awkward conversations.   If you still feel quite lost and unsupported, you can ask friends and family to talk to SIDS and kids. Their counselling service extends to all of those touched by child loss. A dear friend often rang SIDS and kids in the early days as she wanted to learn ways to support me as best she could. I am so grateful for that.
  10. Unless a person has lost a child, they will never fully appreciate the depth and breadth of your grief. That’s okay – we want as few people as possible in this “club”.  However, it’s  important to connect with people who do know that pain and can offer a different kind of support.  Whether online or in person, child loss support groups are incredibly important and will relieve some of the pressure on you and your friends and family.

There is nothing fair about losing a child.  It’s not fair that this burden of education falls on the people who already have such a heavy load.  But the reality is, it does and the way we carry that load has a significant impact on how well supported we will be during this journey.  By assuming people know what to do, or seething without saying anything when they try and fail, we break our fractured selves just a little bit more.   The best advice I received when we said good-bye to Xavier was to “go gently”.  Go gently on our own hearts, and the hearts that surround us.  Go gently.

When Awareness Hurts – what we can learn from Capture Your Grief

Day 5 - Memory

My photo from Day 5 – Memory

October was infant and pregnancy loss awareness month.   It was also breast cancer and Downes Syndrome awareness month.  I had always intended to post something today about those causes, how they intersect and the importance of supporting each other through the curves balls that life throws at us.  Perhaps I will still write that post.

But something happened during October.  Life threw one of those curve balls and left a lot of people I do not know personally, but feel intensely for, hurting.  During the month of October, the beautiful and inspiring Carly Marie hosts a photography project called “Capture Your Grief” online and in particular on a Facebook event.  You can learn more here.  Basically, each day is given a subject and we let that provide inspiration for a photograph that documents the grief and healing journey for that month.  It is a beautiful and healing project that I have taken part in twice now.  It serves two purposes.  Firstly, it allows people to share their grief in an accessible way – it has lead to conversations and understanding between the bereaved and the people that surround them.  Secondly, it increases awareness about child loss.  The event is public and purposely so.  It’s about breaking the silence and bringing light to something that has remained taboo for too long.

On the 30th day of the project, the silence was shattered, but in a terrible way.  One mother made the brave decision to share a photograph of her  precious son.  Her son was still born at a gestation that would not support life.  Perfect little proportions sheathed carefully in an oh-too-tiny blanket.  To begin with, that mother received amazing support.  But as the comments and likes began to climb to viral proportions, the comments started to get nasty.  The image was seen by millions of viewers on Facebook due to it appearing on news feeds of those with friends who liked or commented.  Of the over 40K comments that were eventually posted, the majority were hateful.   The vitriol then spread to the Capture Your Grief page itself, with people insisting photos of angel babies shouldn’t be on Facebook, that they didn’t want to see them, that such photos be kept private, that people were only posting them for attention and that doing so was disrespectful to their angel babies.  The irony of making a disrespectful comment whilst telling people how to grieve respectfully seemed lost.  I did not read all the hate.  I believe it’s easier not to let negativity in then to do so and then have to release it.  But people would have.  Bereaved mothers and fathers would have read every one of those hateful comments and felt them like a knife.  Many people were hurt.  Bereaved parents responded with understandable anger.  The comments escalated to a point where there was no choice but to shut down the project.  One day before it’s completion.

The silence was broken.  And it illustrated just how far there is to go before still birth is openly discussed and shared in our community.  It also made me ask some hard questions of myself.   I have seen many photos of babies – living and in the arms of the angels.  When I see a photo of a baby born too soon to survive, I see a daughter, I see a son.  I know there is grieving mamma.  I know there is aching father.  I know there are siblings, current and future, that have been robbed of a play mate.  I know that this photograph is one of the few precious momentos that family has.  It provides proof of their baby’s existence.  I hold the precious privilege to view those photographs carefully.  I know this because I know bereaved parents who have lost children to still birth due to prematurity.  But if I didn’t know this, if the first time I ever saw a photo of a premature stillborn child was through a facebook image that I did not request to see, what would my reaction be? Would it be love and support?  Or would it be confusion?  I don’t think I would leave a message of hate – I think I understand a parent’s love of their children too deeply to do that.   But I think I may have been confused as to why a parent would share something I would have then considered intensely private with the faceless world.

It is not until you are in grief yourself that you understand that the privacy that surrounds death is not for the comfort of the mourning, but rather to protect those around them.  Those that would rather believe in a world without death, and particularly one without infant loss.  It is not until you lose a child that you realise the importance of sharing their memory and insisting on their existence.  It is how you mother a child gone too soon.  It is not until your own motherhood is shaped by loss that you understand the need to scream to the world “I AM a mother still.”

I don’t want to see photos of still born babies only because I wish that still birth didn’t exist.  I wish that SIDS didn’t exist.  I wish child loss didn’t exist.  But to reduce the numbers of babies and children who do not survive, awareness is necessary.  To provide the necessary support to parents with broken hearts, awareness is necessary.  I wish that all pregnancies ended with healthy babies that lived long lives.  That’s not the world we live in. I don’t want to see images of war torn countries, of broken bodies belonging to innocent children.  That doesn’t mean I shouldn’t know what’s happening in Syria.  What we want to see and what we should be aware of, are often very different.  For change is not possible without awareness preceding it.

I do want to see photos of the children mother’s hold dear.  Whether in their arms or their hearts.  I do want each and every mother and father to have their parenthood respected and recognised, whether you can see their children or not.  I do want to live in a world that recognises life in all its beautiful forms, that is kind, that is peaceful, that brings joy and light rather than hurt and darkness.

Which brings me to a choice.  I can join in the angry escalation of voices, I can let hatred breed hatred or I can let go.  I can be the peace and the kindness I yearn to see in the world.  I can keep speaking about child loss and try to bridge the chasm between the bereaved and the non-bereaved.  I can try to help people understand.

To view Carly’s response to the events surrounding the closure of Capture Your Grief and what we can learn, see below  .