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  .

7 thoughts on “When Awareness Hurts – what we can learn from Capture Your Grief

  1. I cannot believe people would leave hurtful comments on a project that is designed to help people heal. Yes a photo of a still born child is confronting, but only because of the loss their parents have suffered. Although I’ve not personally participated in Carly Maree’s project, I have appreciated the opportunity for the parents to continue to heal and also the opportunity to remember and celebrate their little ones. Shame on the people who can’t see that!

  2. I think it is small minds and ignorance that will cause a person to write hateful comments. I support Capture your Grief, and the supportive work of Carly May and also Robyna who has drawn more awareness to the grief of those parents hurt by these actions of others. Stillbirth is a tragedy. My sister lost a baby to stillbirth, and I unfortunately lost a 15 year old daughter who was murdered by a 19 year old girl who thought in murdering her she could take her place. I know what it feels like when someone says would you mind taliking about something else, when people shy away because they are afraid of your grief. I also have a Down Syndrome sister who is 52, and my parents experienced being shun by others when in 1962 they brought her home to live with her family. My parents did not take the advice of the hospital who encouraged them to leave their daughter behind and relinquish her to the State, and to forget they ever had her. So ignorant people do hurt and shame on them for not understanding.

    • Oh Elizabeth. You are travelling some hard roads there. So much damage is done by “experts” who have never actually walked in the shoes of the person they are advising. Much love to you and your family.

  3. I’m so sorry that such a uniting, cathartic experience for the loss community was ruined… It would be nice if people could be a little more understanding without enduring the trauma of losing a child themselves. You and Carly Marie and all of the loss parents who bravely blog to raise awareness are helping that to happen, though, and I know that the disrespectful bile of a few trolls with their heads in the sand won’t stop you fighting the good ‘fight’. *great big hug *

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