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.

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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.

1, 2, 3 – Loving all my children

When I was pregnant with Xavier I worried that I would not be able to love him as much as I did Isaac.   How could I love anyone with the same intensity as my firstborn, my little buddy, my constant companion?  We had been each other’s world for so long.

What I had not been prepared for is that the all-encompassing love you feel when your first is born hits you all over again when your second enters the world.   I had thought this love bomb had already been ignited when Isaac was born, but here was this intensity once again.  The love you feel right to your bones and takes a hold of your soul.  A thousand loves impacting you all at once. The only thing vaguely comparable is the obsessive love you feel in the first throes of a relationship when every thought is occupied by your crush.   Take that feeling, deepen it and multiply it by a thousand and you still won’t come close.  This is the all-consuming love that is born with your baby. Your first, your second, third, fourth – it doesn’t matter, that love remains just as powerful.

Xavier became the centre of my world, just as surely as I was his.  Everyone else just orbited the peripheral edges.  Including my darling Isaac.   He came to see us in the hospital.  His three-year old body ridiculously large.  His hands and feet preposterously enormous.   For a split second, as he shifted in my mind from baby to big brother, he seemed a stranger.  I had not expected this.   My heart expanded and swelled and there was more love for both of my boys.   But my focus had shifted to the child who needed me more.

When Elijah came into our lives I was prepared and I knew that my relationship with Isaac would change again.  I also knew that my relationship with Xavier would change.  Early in grief I had decided not to relate to Xavier as a newborn – he had a different role in our lives.   I disassociated pictures of infants from Xavier – I tried to avoid imagining what he would be doing as a baby and instead focused on the more abstract ways we experienced him.  The sunshine, butterflies, nature’s beauty and the kindness of  others.  It was a way of protecting my heart.

But when Elijah lay on my chest for the first time it was impossible not to think of Xavier. To remember what was and what might have been.  But in that moment, I didn’t feel an aching sadness, I felt gratitude for this new life and Xavier’s part in protecting his little brother.   My relationship with Xavier continues to shift and grow.  My need for a baby in my arms has been soothed by Elijah.  This portion of my grief – the fact a newborn was ripped from my arms like the severing of a limb, has been begun to be healed by littlest boy. But my need to still love and mother my middle child has not eased.  The fact I miss just him remains – that has not lessened.  My relationship with Xavier has become more uniquely about who he is and what he means to me, and less about regret for what we will have never have with him.   The way I mother him will change accordingly.  Each of my boys with their special place in my expanded heart.

DSC00267Isaac with Eljah

IMG_2118Isaac with Xavier

Ladders in Loss

There is an unwritten ladder of grief that bereaved parents seem expected to adhere to.  An expectation by society that a miscarriage hurts less than a still birth, a still birth less than a neonatal loss,  a younger child less than an older one.   And the length of time allowed for grieving contracts the younger your child was at the time of loss.

The truth is, that ladder is a lie.  There is no “more than” or “less than” in grief – each story holds its own tragic weight.  A weight that defies categorisation or comparison.  For as much as there is no “less than” there is also no “the same as”.  My grief over Xavier is different from the mother who lost her baby at birth, different from the father who lost his son to an accident at three years old,  different from the parents who learned at their thirteen week scan that their baby had no heartbeat, indeed, different from another  family who lost their son at two weeks old to SIDS.    But it is not “more than” and it is not “less than”.  We are different but bound by the common devastation of holding a child in our heart, rather than in our arms.

There is no finite amount of grief that needs to be shared amongst the bereaved.    Each journey is different and each journey is valid.   How someone else grieves their child is their business – the intensity of their sadness does not somehow invalidate my grief over Xavier.  There is no competition. There are definitely no prizes.

When we first lost Xavier at just two weeks old to SIDS, I wondered whether it would have been easier if  he had born still.  Would that have hurt less?  It is an impossible question.  I am so grateful for the two weeks we spent with our middle son.  I would never wish it away.  I would rather have loved and lost him, than to have never had him at all.   Every parent treasures the time they get to spend with their child.  And yet those that didn’t get to spend any time with their living baby outside the womb are expected to hurt less.  It defies logic. A baby is a baby to their parents the happy moment they find out they are pregnant.  Hopes and dreams for that child often formed before that.  Every baby is a miracle.  Whether you grieve the memories you made or the memories you never got to make, that grief is real and cannot be contained within imaginary boundaries.   Parents need to grieve, without judgement and without ladders.