Seasons in Grief

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There are seasons in grief.

The first Winter – desolate and cruel. Seemingly unending. Life is frozen in the moment you said good-bye. Everything is grey, turned to ash. Food has no taste. Blooms no scent. There is a hollowness that echoes through every moment. The weight of a missing baby heavy against you. Absence, weighing more than presence. Crippling. It is impossible to concentrate, to still your mind long enough. There are words, and they fall, softly as snow, around you. You know they mean well but the words don’t bring summer back. And the void the baby who left made is so vast that you could fall into it at any moment.

Then, gradually, the Spring. Hope shooting like new grass. The colour starts to return to a faded world. You hear an unfamiliar sound and realise it’s your own laughter. You hold a newborn baby and instead of it ripping you apart, you think about a promise for your future. Life beckons and, with hesitation, you respond. You wonder if it’s okay – to let this in. Whether you are betraying your baby by smiling again. And then you catch glimpses of him – when the light hits a certain way, when a butterfly floats near, an unexpected tiny white feather settling on your hand. If you listen very carefully you can hear him. And he wants you to be happy. You open the window and you let hope in.

Against all odds, Summer enters your life. There is joy again. There is sunshine and there is life. There is beauty and purpose. There are so many things you once never thought possible. And against this brilliant blue sky, the knowledge that you lost a baby feels uncomfortable. How could you have lost someone so precious and be happy? How is it possible that a life full of love and laughter can also accommodate such enormous loss? You once thought that you could never be happy again – that life could be bearable at best. Yet, here you are, filled with contentment. The photos that once could only illicit tears now bring a melancholy smile and there is gratitude for being part of a precious life, no matter how short. You have come to some sort of peace. Not an acceptance, or even an understanding, but a life that can accommodate loss and still be beautiful. You feel him in that sunshine and it warms your heart.

Autumn falls. Little reminders. The tug of winter. Things that were once easy, become less so. An anniversary approaches, a birthday, Christmas, Mothers Day, Fathers Day. Days that remind you of the great hole in your life. Or perhaps it is a word, a memory, a song that cuts at the wound not quite healed. A chill enters. You try to shut the door, to close it out, but winter is insistent and sometimes grief has its own agenda.

And then Winter can come again. Never as long or as cruel as the first, but the sadness creeps back.

But no season lasts forever and love lasts through them all.

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The Grief Words

Your world shatters.  You find yourself alone.  You see pity and sympathy in the eyes of family and friends, but they do not understand.  They hurt, but their hurt is not your hurt.  You search for others who share your story.  You try to normalise the thing that is so far from any sane normality.  You find them.  Online and in person. This community of loss.  This beautiful and fragile community of tattered souls.  Facebook groups, blogs and forums dedicated to babies and children stolen from their mothers’ breasts and their fathers’ embraces.  And there is such aching beauty.  Words strung together as delicately as beaded necklaces.  Artwork that touches deep nerves.  Poems and images that steal your breath as they gift you tears.  Enormous and important things achieved in the name of children who may no longer live on earth but whose impact is great.

But through this thin veneer of beauty, do we hide from ugly truth?  Do the newly bereaved come across these sites and wonder where the pain is?   Where the heart-stopping, gut-wrenching, puking, sobbing messes are?  I don’t think I have ever written publicly about the true pain of grief.  The darkest of days, where even the weight of water in the shower was too much to bear.  When my skin crawled and the ache in my arms to hold my baby felt like the loss of a limb.  When the only relief could be found in sleep and the sleep would only come when I was too exhausted to think.   I cannot convey in words the pain of those days.  I remember wanting words.  Yet, no words were horrific enough to capture the pain.  I do not swear, I never have.  But even the worst words I knew could not scratch the surface.  There isn’t even a word in the English language to describe a parent whose child dies.  There are orphans and widows and widowers but no noun for those who lay their children to rest.  And as I searched for a word ugly enough to sum up the wretchedness I felt, words beautiful enough to describe my baby boy also remained elusive.  Perhaps that is a struggle felt by many who populate those online groups and forums.  How do you express a pain so horrific in the place you are recognised as mother to your child?  How do you articulate the depts of hurting when you also want to celebrate your baby? How do you find language that isn’t repressible and offensive to describe something so bitterly broken? How do you reach out and seek comfort when you want to spew barbed wire and bile and venom?  How do you tame the rage and the anger to a gentle simmer to remain polite amongst people who share common ground but are, for the most part, strangers?

For those in their grief who find comfort from the beauty, but wonder if they are lost alone on an ugly path.  Please know, you are not alone.  There are just no words to capture the depth of the hurt just as there are no adequate words to capture the enormity of the love.  For the pain and the grief run deep because the love never ends.

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.

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.