What grief does to couples…. and how you can help

I remember it still so clearly.  We had only recently been told Xavier would not make it.  N and I were clinging to each other, drawing strength from one another, constantly checking that the other was surviving.  Our beautiful social worker looked hesitant before she said it.  But she said it anyway. “Some couples worry that their relationship won’t survive this.  And some don’t.  Those with strong relationships seem to get stronger.  Those with problems, don’t always make it.”  N  glanced at me.    The thought of losing each other in the midst of all this loss had never occurred to either of us.

When we first said goodbye, N and I literally clung to each other.   We moved as one unit, intuiting want the other needed in that moment.  But as time moved on, it become clear that we would grieve in very different ways.   I worried that he didn’t want to talk about Xavier.  I worried that he didn’t see a counsellor.  I worried that he was burying everything deep within.  He worried that I was obsessing.  He worried that my constant writing and being a part of support groups was keeping me in stagnant grief.  He worried that I was not letting go.

In the end we realised that we had to accept that our grief was different.  No grief road is the same, even when you have shared the loss.  We were able to respect each other’s ways of grieving, even when we didn’t quite understand it.  Even now, we are different.  I will visit Xavier’s grave and chat to him.  N will visit and shed silent, still angry tears.   I will talk about Xavier and whilst he will not, every day he wears a set of cufflinks engraved with Xavier’s handprint and a bracelet etched with each boys’ birthdate.   We parent differently and our relationship has been able to bear that. We have been incredibly lucky to be able to make those choices within our marriage.

Children change relationships.  They alter your life’s path.  Grief over a child, perhaps even more so.   There is very little support available to couples to navigate that journey.   A dear friend, alongside two other couples who have lost their children too soon, are working with the Mater bereavement team to provide that support.  But they need your help.

Seeds of Change is a support group for couples that have experienced the death of their child.  Whilst SANDS and SIDS and Kids offer wonderful support for mothers and fathers, there is very little that specifically focusses on relationships.  Seeds of Change seeks to change that by offering grief workshops that will help couples grow through their loss.

If you would like to help Seeds of Change, please vote for their dream at Sunsuper Dreams

If they are successful in getting the most votes this month, 50% of the funds will go towards much needed research into Stillbirth with the other 50% going to services for the bereaved.

 

 

 

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  .

What TO say to the grieving

When we lost Xavier, we were incredibly lucky with the support we received.   Very few people said “the wrong thing”.  And whilst I know most of our friends and family were lost for words,  we felt their support, their prayers and their love.  This is not everyone’s experience after losing a child.

There are plenty of excellent blog posts about what not to say to a grieving parent.   I wanted to talk about why these things are hurtful and some alternatives.    Grief is different for every single person, but at the same time there are commonalities about what gives comfort and what does not.   If you cannot find the right words, that’s okay – just say that rather than relying on trite platitudes.  The sweetest sound will always be my baby’s name.

At least you have your living child/ren.
A bereaved parent is highly aware of their blessings – it may be the only thing they are holding onto.  They don’t need you to point them out.  They did not gain those living children as part of this loss and those children are also grieving their sibling.  In addition, grief is time consuming and tiring work – it can make looking after other children very difficult.   The slack that would be given to a mother of a newborn baby is not afforded to a newly bereaved mother, even though she needs it just as much.
Instead say “I am sure that your living child/ren are a huge comfort right now but I can also see that you need to spend time with your baby and your grief.  Can I help you out by baby sitting?”

You can have more children.
Firstly, you don’t know this nor do you know what the parents have decided regarding have more children.  Secondly, it’s actually irrelevant.  This grief is about their child that has passed away – children are not replaceable or interchangeable.
Instead say “I am so very sorry that (say their baby’s name) couldn’t stay longer.  I will always remember him/her with you.”

It could have been worse – your husband / wife /older child might have died.
You play head games in grief.  You think of people you would  have rather lost than your baby.  Don’t second guess what the result of that horrible game might have been.  Besides, this comment is never going to be comforting to a person who is now suddenly terrified that loved ones can be snatched away  without cause or reason.
Instead say “I can’t understand why this happened to you.  It’s just not fair.”

There are in a better place / this happened for a reason.
This might be your belief.  But I can tell you now, the only person that gives comfort to is the person that hasn’t lost the child.  The best place for any child to be is in their parent’s arms and there is never a good reason for a child to die.  This just isn’t helpful and I think we only say it because someone taught us to say it when someone dies.  Perhaps it has it’s place when an elderly person dies, but not an infant.
Instead say “I don’t know how the world works and why such terrible things happen.  I wish your child was still with you and I will remember them always.”

It was only a miscarriage / thank goodness you lost them now, rather than when they were older.
There is no “only” in child loss.  Every person deals with things very differently and there is no right or wrong.  There are no measures in child-loss grief, there are just different circumstances and the same aching longing to hold our babies.  If you have children, ask yourself – would you prefer to lose them now or later on?  It is an impossible question and trying to answer it gives no comfort.
Instead say “I am so very sorry for your loss.  I am here if you need me.”

I couldn’t get out of bed in the morning / I couldn’t be as strong as you are / The Lord only sends you as much as you can survive – you must be so strong.
The truth is, if this happened to you, you would be getting out of the bed in the morning. You would be trying to make things work.  Your family and friends would still need you.  Your heart and head would have stopped and life would keep moving around you.  Whilst it is probably not what you mean, when this is said to a grieving parent they can hear the intimation that the speaker loves their baby more – that the loss of their baby would render them incapable and therefore their love must be greater.   Strength comes to you because you need it, not because it existed prior to loss.  Extra pain is not allotted to those with extra strength.
Instead say “The days must be really difficult and I want to help you.  When can I bring dinner around for you?”

My sister/friend/mother/aunt lost her baby, and she didn’t carry on this way.  You need to get over it.
Every grief journey is different.  Some are intensely private and you actually wouldn’t have a clue what their heart really looks like.  Others need to express their pain publicly.  Some have never been allowed to express their grief.   The pain of losing a child doesn’t go away, it dims with time but often flares up.  A bereaved parent will need to talk about their child.  Will have bad days, even years after loss.  A grieving parent learns where their grief is accepted and where it is not.  You need to decided which kind of friend you want to be – the one that can live with the discomfort and be there, or the one that would prefer  your grieving friend wear a mask for your benefit.  Think about why you want them to “get over it”.  Do you just miss the person that they used to be or are you genuinely concerned for your friend’s emotional wellbeing?  If you are concerned about their wellbeing, then you need be there for them.  Whatever that might look like.
Instead say “I know that you will miss (say their baby’s name) forever.  Do you want to talk about her/him?”

If you are genuinely concerned that their grief is overwhelming them to a point where it is unhealthy – that is they aren’t taking care of themselves or their family or they seem suicidal, say,

“I know you will miss (say their baby’s name) forever.  I miss them too. I am worried about you.  Is there anything I can do to help?  Do you want to talk? ”    

Educate yourself and contact your nearest SIDS and Kids.  They have counsellors who are experienced in consoling the grieving and they can help you understand what your friend needs and how you can help.

Ever since you lost your child, I have been terrified of losing mine.  Being around you makes me uncomfortable. 
Fortunately, child loss isn’t contagious.  But you do feel terribly, terribly alone.  Having people move away from you because they see their worst fears realised in your life adds to that isolation.  It is natural to fear something that has suddenly become real in your world, but that’s something you need to deal with – not the parent that has lost their child.  Think about the level of your friend’s discomfort and compare it to your own.  It’s not that bad is it?
Instead say “I am so very sorry that (say their baby’s name) isn’t with you.  They should be in your arms.  Please let me know if being around my baby/bump makes you uncomfortable. “

I don’t pretend it’s easy to find the right words.  I don’t pretend it’s easy to go out of your way and really help the grieving.  I don’t pretend that it’s easy to step out of your comfort zone.   But, at the end of the day, if you think any of it’s really hard, it’s nothing compared to losing your child.