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.

Welcome to the world little rainbows

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All over the world, new parents are gazing with untold love, adoration and awe at their newborn children.   Of these, a small percentage are filled with just a little more wonder, just a touch more disbelief, slightly more  gratitude that their sweet little baby has arrived and done so safely.   They are the ones who do not sleep, but watch over each breath.  The ones who marvel at the sound of little cries, not quite believing they are real.   The ones that have to pinch themselves that so much joy has finally come into their lives.   When a midwife assures them that babies are less fragile than they look, they are the ones that regard that advice with suspicion.  Experience has taught them differently.

They are not first time parents but the baby they held first was without breath.  And at painful times, without  recognition. Midwives, doctors and friends might refer to them as first time parents, as new mums and dads.  Not necessarily because they are ignoring the baby who came before – the baby that didn’t take a breath or only snatched the smallest amount of life. But because our language has no word for a parent that loses a child, let alone to describe a parent who has lost a child and then welcomed a living baby into the world.    These mothers and fathers have had to parent in the hardest of situations.  They have had to find ways to love and connect with a child that they cannot see.   They have had to nurse aching, empty arms.  They have had to find strength they never knew possible.  They have had to fight for their motherhood, for their fatherhood.  They have kept memories alive.  Their hearts have been broken and yet swelled to accommodate the most amazing of loves.

And now these parents face a new and alien set of challenges.  How to bathe this little one.  How often to feed. How to soothe cries. How to tell if he’s too hot, is she’s too cold.  But there are other things they already know.   That the love for your child is all consuming.  That you love them a little more dearly each day.  That being a mother or father is such an awesome and beautiful responsibility.   They know the full precious weight of their baby. They know every breath is a treasure.  And they know that this little one has a big brother or sister, looking over them. Keeping them safe.  They know that their family looks a little different from others, but their first child or children will always have a place within it.  They have loved and loved and  loved.    And now they get to love a baby that demonstrably loves them back.

With much love to all the parents who have recently welcomed rainbow* babies into their families, but particularly those who are welcoming a child after losing their first.

*A rainbow baby is the term used by the loss community to describe a child conceived after loss. It refers to the hopeful rainbow that appears after a storm.  The storm does not refer to the child that did not live. But rather the very dark place that inevitably follows after loss. Nor does a rainbow signify the end of grief.  A rainbow baby brings hope and light into a shattered family, whilst they still miss and grieve for the child they hold in their hearts rather than their arms.  

The spaces that define you

“Is he your first?”  “How many children do you have?”  “Does he have any brothers or sisters?”.  Innocuous questions.   Until you are grieving mother.  Then they become the questions you dread.  The questions that can leave you gasping, even when you have a well rehearsed answer.

“He is my third son,”  I answer with confidence and hope and pray no more questions follow.  But of course they do.  Because the natural thing to ask is how old.  To comment on  the chaos three little boys would inevitably bring.  And then I have to share Xavier’s story.   And suddenly a superficial exchange has been thrown somewhere entirely different.  Somewhere uncomfortable.  They make apologies.  I make apologies.   I have shifted in their eyes.  I have exposed a tender wound.  I have become to object of pity.

Before losing Xavier and learning a great deal about myself,  I used to think I had come to a place in my life where I was no longer jealous.  In my early twenties, as I watched friend after friend get engaged, jealousy consumed me in an entirely unhealthy way.  I believed that by the time I was thirty, I had let that go.  I watched dear friends build the houses of their dreams and I was so happy for them and surprised at my own lack of envy.  After Xavier’s death I learned some things about who I truly was.   I was not jealous, until they had something that I truly wanted and didn’t have – two living sons.  I did not tend towards jealousy, but I didn’t mind one bit if people were jealous of me.  In fact, I believe I courted it.   And to be object of the flip-side of that – to have people pity me.  To have people think “Thank God that wasn’t me”, was foreign and uncomfortable.   I am still not comfortable with it. And, at least in my mind, it is a natural reaction to Xavier’s story.

When someone learns for the first time that we lost a son to SIDS, I am thrown right back to the beginning again.  As they absorb what I have said, I watch their face change.  They have not accompanied me in the past year’s journey.  They don’t know where I am in this grief.   It has hit them anew, and I am taken back there with them.

I am proud to be Xavier’s mother.   I always will be.   I am happy to be defined as his mother.  I sometimes struggle to be defined as his grieving mother.    It feels like a terrible betrayal, but I am yearning for spaces in my life where I am not recognised as a grieving mother.  Spaces where I can pretend, even for a short while, that I am just as everyone else is.   People ask me how many children, and I find I am now being more evasive – “I have a four year old at home”.

But this presents me with a challenge.  Am I betraying a greater truth by not always proudly owning the mourning mamma persona?  Do I add to the taboo around talking about child loss?  Am I blindly perpetuating the myth that we are all happy, shiny people?  So often when I do open up about Xavier, people tell me something they are struggling with.  That window of opportunity would not exist without my first revealing my greatest hurt.

What is my responsibility to Xavier?  To the community of grieving hearts?  To the wider community? To my own soul and what I need?  How much do I always need to reveal?   I am still working through these questions.

But this I know – even as mother to living children, I need spaces aside from the mummy persona.  Spaces to create, to think, to be.   Recuperative space where I am nothing more or less than the bare bones version of myself.   And perhaps, this is what I yearn for when I say I need space away from being a grieving mother.

The Narrow

Have you ever noticed how often we use words associated with death and dying when we describe how babies sleep?  Dead asleep, dead to the world, sleeping like an angel, out like a light, in another place, dead weight, gone, out to it, passed out.   People sometimes say these things when describing Elijah sleeping.  Then they realise and look at me with momentary horror as they register the meaning of their words.  It’s okay.  It doesn’t worry me too much.   But there is a reason we use those descriptors.   The space between a baby sleeping and a baby never waking is narrow.  Narrow in a way that terrifies me.

When Elijah is deeply asleep, his body still and his breathing almost undectably shallow, I panic.  I place my hand against his stomach until I feel sure that he is okay.  Even though I know what a baby without breath looks like, I am still terrified.  That moment that severs them from life is instant in most SIDS cases.   One moment of this earth and the next beyond it.   I imagine two lines branching out from single one.  Two lines travelling in very different directions, but at their origin, separated by only the slightest of degrees.  When Elijah is deeply asleep, it’s not a stretch to imagine him taking the darker of those two paths.

I used to say “babies bounce” and be part of the confident parenting brigade that espoused the deceptive toughness of newborns.  It’s conventional parental wisdom – you are afraid of breaking your firstborn and treat them like china.  You realise that they are tougher than they seem and relax on your second.  And it’s true – babies survive so much.  It’s hard to hear tales of babies surviving starvation, abuse, tragic accidents and medical difficulties when your own baby couldn’t even survive a nap.   I love a miracle story as much as the next person, but there will always be that lingering thought “where was my miracle?”    Why was Xavier the antithesis of a miracle? He had a 999 in 1000 chance of living and he did not.

When my first son, Isaac, was born I expected to feel an immense love. I had read enough to know that would happen. I was surprised by the ferocity of that love.  That feeling that I would not only take a bullet for my son, but that I would have no problem pulling the trigger if I needed to, to protect him.     That there was absolutely nothing I would not do for him.  A lioness with her cub.  When Xavier was stolen by SIDS, I had no chance to fight for Xavier.  We were given a day in hospital, which is so much more than so many SIDS families, but it was immediately clear that this was a chance to say goodbye. There was to be no fight.   There was no rollercoaster of “will he make it or not”. There was just a little life snuffed out.   He had no chance to change his world whilst he was a part of it.   He was here and then no longer here.   The space between those realities too narrow.   No space for me to squeeze between and save my son.   Two weeks.   A sliver of time, too short to seem of consequence.   And yet his impact is indelible.   He changed lives.  Mostly for the better, but now fear is written on my heart.

The chances of Elijah dying are narrow.   So close to zero that it would seem impossible.  But Xavier fell into that narrow crack, beyond all reason and sense.
As Elijah gets older, the smiles and gurgles more frequent, he feels more of this earth.   It feels as though his place is permanent.    And every time he wakes again in the morning, the gap between him and the unthinkable narrows.

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.

Dear Mummy

I have had a rough week. Plagued by doubts about my ability as a mother. Many episodes of being convinced that Elijah will die. Watching each breath as though its his last. Missing Xavier more acutely as I am reminded exactly of what I missed and time takes Elijah further away from Xavier’s little life.

When it all gets too much, I imagine what Xavier might tell me if he could.

Dearest Mummy,
I have seen you struggle these last few days. Seen the tears fall and wished I could wipe them away.

When you watch over Elijah, so convinced this breath will be his last, I am watching over him too. I promised to keep him safe. Trust.

Why do you think yourself a poor mother? You have been told so many times you could not save me. You have been told so many times you are a good mother. Those that you know that have suffered loss, those you have cried with, do you judge them poor parents? Do you think them anything but beautiful and wonderful parents? Turn some of that kindness to yourself. You are a good mother. Believe.

I know you hold him in your arms and ache for me. I know that having a newborn has made what we missed so much more real. I know that connecting on a spiritual level comes a poor second to touching, kissing, breathing in sweet baby scent. I wish things could have been different too. But this is what we have. And I need you to still nurture it. I still need you. Love.

These days shall pass. Too quickly. Enjoy them. Enjoy the moments that will eventually draw us together again. Cherish.

I love you mummy.

The New Me

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The baby loss community is an especially beautiful and supportive one.  When a new member joins this terrible little club, they are extended love and understanding.  When I joined this group that no-one would ever want to be a part of,  that support was invaluable.

In the wake of Xavier’s death, I found comfort online but I needed to see someone who had lost their child and was still living and breathing.  I met with a gorgeous lady who had lost her baby son many years ago.    At the time,  I was in a strange robotic stage of grief.  Not entirely sure what I should be doing or feeling but fearing the future.  I was acting from a script I had to re-write myself from day to day.  In so many ways feeling liking a passive observer – watching myself from a distance and fascinated that this was the way I was handling things.   I felt like I was edging along the huge abyss of time that separated me from Xavier and any mis-step would see me fall right in.  Was this my life from now on?  Was it even possible to sustain?  How would my life look in the months and years to come?  So, I looked to this lovely stranger who shared my devastation and she told me how her son had changed her – how her grief had reshaped her into a very different person. A better person.

I didn’t want to hear it.  I didn’t want Xavier’s loss to make me into a better person. I was entirely fine with the person I was before he left.  I needed no extreme makeover administered by the hand of fate.    And this empty vessel, clinging to life, battered on the shores of grief?  I didn’t want to be her.   I looked in the mirror and I couldn’t recognise myself.  I had become a stranger.    This was not some better version of myself.  This was a shadow, an echo.  A leaf on the wind, without substance or purpose.   I didn’t want to get out of bed and be strong each day.  I didn’t want to be looked at with pitying admiration.   I had no interest in being an inspirational story.   All I ached for was my son.  I would think “this grief thing has been interesting, I have learned a lot but I will have my son back now please”.   Hoping against hope that someone would come to the door, Xavier in their arms, and apologise for a dreadful mix up.

In that early time, I  was convinced that Xavier had been taken from me to teach me a lesson.  To show me that life couldn’t be perfect.  Until that point, my life had remained untouched by tragedy and was rich with blessings.   I thought I had been spared fate’s cruelty.   And then it was as though fate noticed me, said “Ah yes, she’s had it easy for far too long, now, what’s the worst thing I could do to her?”  And this conspiracy by fate to teach me a lesson – I wanted no part in it.  I would not be taught – I would not allow a reason for Xavier’s death.   If grief had gifts to give, I didn’t want them.  Accepting them felt too close to accepting Xavier’s death.

Could I not simply go back to who I was after a period of grieving?  Did I have to lose who I was as well as my son?  Where did the losses end?

But grief becomes a gentler companion with time and it was inevitable I would change.   Perspectives alter when your world shifts.  What is important becomes crystal clear and you begin to see that it is possible to gain in the midst of loss.  I began to realise that the person I was becoming was a way of honouring Xavier’s life rather than giving some sort of credence to his death.   Began to appreciate that treasuring every moment was a gift he had given me.    In the early months after Xavier died I struggled with the idea that the happiest moments of my life were behind me.  That no beautiful moment could ever be perfect.  Whereas I may have had plenty of those perfect moments prior to Xavier’s death – did I realise them? Did I treasure them?  Did I truly realise the full precious weight of those moments?  And so now, even though the moments are dulled by sadness, I appreciate them in way I never could before.  There is more beauty in my life because I pause to notice it.  I invest more in friendships because I know how valuable they are.  I love more because I have seen just how much I am loved.  I take each moment as a gift.   Each of those moments, strung together and stitched into time.  Those moments that rather than separate me further from Xavier,  will eventually bring me back to my son.  And that is something to treasure.