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“I don’t know what to say”

This is something I’ve been thinking about a lot in response to the questions raised by Ana’s posts and our discussions.

It’s one of the most common refrains heard by the bereaved.  It’s an honest response that can sometimes land badly.  Saying it can feel weak.  An irreversable shift in someone’s world needs greater acknowledgement.

Popular culture spoils us with grand speeches, meaningful pauses and the all purpose guide to feeling sad that comes with a suitably melancholic soundtrack prompt.

With all that to contend with “I don’t know what to say” can seem empty in comparison.

At least…

At the other end of the scale we have the much derided platitudes or ham fisted attempts at reassurance.  It is a source of much wailing and gnashing of teeth and I’ve had my own pop at those empty phrases and thoughtless words before.

To a certain extent this type of cathartic venting serves a useful purpose but there is a danger to that release of pressure.  Blowing off steam is one thing but scalding someone with it may drive them away and leave them wary of offering condolences in the future, paranoid of saying the wrong thing.

Six degrees and the (un)kindness of strangers

Reactions to this are rarely consistent but there are some common factors.  The distinction sometimes is the closeness of the relationship.  This itself can shift depending on what level I’m on but careless / hurtful words from friends and family can sometimes be the hardest to forgive because the underlying expectation is “I thought you knew me” (itself an irrational position because how well do I know them?).

With strangers it can flip one of two ways.  It can be easier to disregard well meant but awful words as there is no real baseline for the relationship.

I have to appreciate that it’s a large drop from small talk about the deceptively ‘safe’ topic of children to a level of horror they will have little preparation for. It’s like talking to someone blandly about the weather only to discover their family died in a freak rainstorm.

On a bad day the reaction may be worse, it can feel like a personal transgression.  This can sometimes come from the difference of values particularly if it feels as though the other person is imposing their framework of religious beliefs around death upon you without acknowledging you may not share that belief.  It doesn’t always follow that what they find comforting will work for you.

Words are so very unnecessary

I’ve struggled with the right things to say and in theory I should know and be able to find the perfect phrase to offer condolences, comfort and companionship.  It’s a sobering lesson to learn that it doesn’t always work like that.  It’s here that I’ve learned the value of space and silence.

Keeping it simple and allowing silence after  “I’m sorry” creates the space that can be filled (or not) by the bereaved. Not adding “for your loss”, no qualifiers, no extrapolations or comparisons.  Just: I’m sorry.

Not a snowflake / No-one knows what it’s like to be me

One of the other parts of Grief Club is the unintentional feeling of specialness. That unless you have been through similar you can’t possibly understand what it’s like.

I try not to think of myself as special but I can see that can feel like a feature of the club (any club but here the distinction is involuntary membership).

When I write about grief and emotions I’m not looking for sympathy or to be told how brave I am.

I am not special.  That’s what’s so depressing.  Club membership swells by the day and it seems only now that this is being taken seriously.

I am not brave and it makes me sad that stigma and taboo around death (and especially the death of a baby) elevates talking about it to an act of bravery.

The death of my sons is not a ‘teachable’ moment.  Their deaths do not give me depth or wisdom or insight. Grief does not make me me a better person.  It makes me a different person.

I don’t tell these stories because I want special treatment.  The things I write about, the things I campaign about are wider than me.  They have at their core compassion, empathy and respect.

I tell the stories to make others feel less alone, to get that maelstrom out of my head and onto a page and make it useful.  I don’t aspire or want to be misery lit or grief porn.  I want change.

The third rule?

We may have a ready list of helpful things not to say* for those who don’t know what to say but what we don’t always have is the same level of preparation for helping people to understand.

Our shared tales of awful words, slights and isolation creates a bond within our club as we offer support, comfort and rueful smiles.

That same bonding can unintentionally shut out those that don’t but want to understand isolating us further.  Our safe space of sanctuary should not become our exile.

If we have a duty to make membership of our club less awful than maybe we also have a duty to help people understand what it means to be a member.

We can only do this by extending to those that want to understand the same patience and compassion we ask of them.

Telling our stories is part of addressing the stigma and taboos around baby loss but stories alone are not enough.  We have to create an environment where those stories can be told.  To do that we need to accept that our stories are difficult to understand.

If the listener responds in an unhelpful way rather than stewing about it or responding aggressively we need to be able to explain why we find those sentiments uncomfortable.

I don’t underestimate how difficult this is but it’s not fair to criticise someone’s behaviour if we don’t let them know that for us it’s not as easy as having another child or finding comfort in the thought of an afterlife that seems cold, remote and alien.

I have to live up to these lofty ideals too and it won’t be easy.  It means having conversations that will be uncomfortable but it’s only by having them that I can get to a stage where there is greater understanding of why I celebrate my sons’ birthday and why the phrase ‘number one grandson’ hurts me.

God knows I don’t want to be an angel

The Right Way to Grieve and my response talked about the contradictions and limits of ‘no right way to grieve’.

It can seem odd that a doctrine that on the face of it encourages a wide range of responses and styles can work to reinforce a particular way of grieving.

This can be one of the factors driving people away from the sources of support meant to help them.

I know this from my first experience on grief forums where I would be contacted by fathers that didn’t post as they were uncomfortable with the dominant language of angels and beauty on the boards.

Talk of angels makes me deeply uncomfortable.  It doesn’t comfort me, it terrifies me.

Boys don’t cry

I’m all for encouraging people to talk about their experiences so they don’t suffer alone and especially for fathers but it has to be their choice.

It’s not right that societal pressures stigmatise and even punish a public display of male grief but neither is it right to force people to open up before they are ready.

Where I can I try to offer my help on the basis that it’s there when they are ready to take it but that may not be for some time.  I see it in some of the comments on the blog promising to come back when the rawness fades.

In response to my post on fatherhood and grief one reader made an astute observation:

“I wonder if we have created something of a dichotomy for men in modern times, in which it has become increasingly expected and normal that they are not distant from their children and the emotional aspects of family life in the way that they were once expected to be, but then when it comes to the tough emotional aspects – grief, fear, sadness – it is not yet accepted that fathers, being just as attached and involved with their children as the mothers, will feel the same emotions and need the same support”.

They’re not dolls: Taboos within taboos

It’s one of the stories we are told about how on first seeing our children we feel that instant rush of love.

It’s a beautiful sentiment but it doesn’t happen for everyone and that doesn’t mean failure as a parent (bereaved or otherwise).

In her post Opposing Forces, Ana speaks of her own experience and that mix of attraction / repulsion towards her own child.  It’s not something that is often said but I know it and I’ve seen it in others.

It does seem taboo even among the bereaved to publicly admit the inherent weirdness and horror of the situation preferring instead to repeat the ‘most beautiful baby’ line.

Talk of angels and the most beautiful beatific perfect babies is the one we know in the same way that movie babies are born aged three weeks old and perfectly clean.

It’s understandable that this benign revisionism takes place.  It helps fix in the mind the way we want to remember our babies rather than how they were.

It’s the reason the photos on the side are from the cleaned up and posed mortuary shots rather than their first photos of my poor battered boys with their patches of skin missing, little smushed faces and terrible yawning mouths.

The latter is why a really sleepy slack mouthed baby fills me with horror rather than a warming glow.

When I first saw my sons I didn’t find them beautiful. I had no idea what to expect.  Their tiny little blood stained bodies dwarfed by what should have been their matching going home outfits broke my heart many times over.  As I cuddled Nathan and looked over to my wife holding Lincoln all of what should have been but would never be became overwhelming.

It was through those cuddles and absent minded parent gestures of wiping our sons faces that I started to bond with them and build the stories they didn’t get to live out.  Those cuddles and stories helped create their identities and become more than just shells.

Not everyone shared that.  They didn’t look upon our sons with love but horror. Some saw us holding our sons and saw only the madness of someone cuddling a corpse and whispering reassurances to ears that would never hear.

When asked if they wanted to hold them (for it would be the only chance they would ever have) they recoiled telling us, no, they didn’t want to hold them, they were not dolls as if speaking to a child rather than to parents that had just lost two.

This hurts.  Part of me feels that if they had cuddled our boys then maybe they would feel more of a bond and not be so quick to gently erase them from history.

But ultimately it was their choice not mine.  It’s not for me to force them to cradle a dead child.

I have raged against those moments and those thoughtless words but by trying to understand that what seemed natural for me may have been deeply unsettling for them I’m starting to reach an uneasy acceptance.

There is much to be angry about but I want to direct it in a way that is useful. That may be in having those conversations or it may be in channelling that rage into a righteous fury to campaigning so it doesn’t happen again.

We don’t need no stinking badges

Unlike many other exclusive clubs we don’t have a badge to mark us out to each other.   Ours is a more symbolic one visible in the wry smiles and distant looks that glaze every now and then as we are pulled into the past or thrown into a future our lost babies could have been a part of.

If I’m to have a badge I will wear it not with pride or shame but as a signal to others that I’m a member of a terrible club and that I’m ready to share their grief or help them understand my own.

*[EDIT 11/7: Thanks to Ana for correcting me that the Sands guide gives things not to say rather than what to say]

Papa Tont
Life with Baby Kicks
Reflections From Me