Right where I am (6 years, 9 months)

I found about this project long after it appears to have fallen dormant off the back of a devastating account of stillbirth in The Guardian from 2012.

As well as providing an unsurprisingly raw account of loss it contained links to many good but abandoned blogs.  One of which was a site hosting the Right Where I Am project.

As it’s name suggests it’s about allowing the space for bereaved parents to talk about where they are in the grief at that moment.  It’s meant to counteract the idea of things getting better over time.  It’s not to say that the rawness of grief will never go away but to show other bereaved parents how it may change over time and circumstance.

Case in point being this post now.  I’m at a place where I’m experiencing the unfortunate side affects of awareness raising in that immersing myself in stories of my own and others pulls me back into the river and it felt like drowning.  I saw myself in images of others hunched over Moses baskets dwarfing the tiny occupants within.  I saw people being open about the rawness in the early days of loss in a way that stunned me.

I’m having a better time than previously and made some good progress in helping people to find the words and encouraged people that haven’t had direct experience of baby loss to learn more about how they can help.

Yet still I find myself having to justify why what I do is important.  Why my cause is more important than any other cause, why baby loss is deserving of special treatment over other types of bereavement.

This is true even when talking with more supportive groups.  Each has its own awareness raising battles and is battling for its slice of compassion pie.  I get that.  What I don’t get is why that should question our right to exist and seek something that supports the elements of grief that may not be applicable to other bereavements.

What I think people don’t get when they ask those questions is that it carries an implicit question of ‘why are you still talking about this?’.  A sense of frustration or confusion as to why time hasn’t healed all wounds.

Part of what is also misunderstood is that when they ask that question it highlights exactly why I am doing what I am doing.  Because bereaved parents have to consider these questions they may feel less able to talk about their grief, their trauma, their babies for fear of being dismissed.  An innocuous question subtly reinforces the very stigma and taboo that awareness raising is trying to erode.

This is the exact point I’ve addressed before in a blog on the long term impact.

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Too tired to write something of my own I looked to the internet to try and find an article I’d seen previously addressing the same question.  Instead I found a different article with a quote that resonated with me.

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After much grumping I finally gave in and joined Instagram following encouragement from Jess and hearing about the great support network there.  After a few false starts I’ve started to get the hang of it and have been posting images with quotes from my posts here.

In doing so I’ve been revisiting my previous posts and reading my own words can be an eerie experience especially when I look at some of the earlier posts written in a mad flurry of activity following the birth of my youngest daughter.  Sometimes what I read makes me sad again, some of it scares me.

It’s been an illustration of both how much I have changed over these years but also how easily I can slip back into that raw state where there’s a tightness in my chest, my blood feels like barbed wire and my head is a swirl, a fog of thoughts.

Part of it is recognising how recently my wife miscarried and how we should have been holding baby or babies this month.  It took me years to fully allow myself to explore my sons’ deaths so it’s not surprising that I haven’t really done so with the miscarriage.  The closest I came to doing this was a charity walk for #StrutYourSongs and even then most of the songs on the playlist were linked to my sons rather than RP.

It’s a weird feeling being a parent of both live and dead children.  I feel like my online presence is defined by the latter rather than the former.  I don’t write about my children or post pictures of them that often.  My parenting style is constantly evolving to meet each shift in development and growing personalities and dynamics.

My shadow parenting style is equally evolving but in a different way.  It’s more about how I keep their memory.  I’ve become used to telling their story and have even started to retell the story in a way that is better for my own mental health and at getting the message across by making their history more human and less abstract than the medical term of stillbirth allows.

My more recent work on #FindingTheWords was written in a  very general way taking a step away from my personal story.  There’s a tension there and an ever present guilt that time spent on talking about my sons and baby loss awareness in general is taking away from my time with their living siblings.  I know that this is bunk, that love isn’t a finite resource but still the guilt nags.  And then balancing that with life after the miscarriage where we are all in such a different place.

The occupational hazard of awareness raising is that it raises awareness of my own experience.  It can’t help but do so, it would be unlikely this work would consume me to the same extent had our sons lived.

The irony of trying to set up a support group and needing that same help was not lost on me when it all went to that mad swirl yesterday.  I had to push the panic button and find someone to speak to.  I was lucky enough to find someone who was much further along the path than me.  We talked, talked of having to justify our losses, talked of the secondary losses of family and friends and the worry that our losses ripped off the paper covering the cracks in what we thought had been solid relationships.

There were no answers, that wasn’t the point.  It was enough at that time to simply get that mad stream of consciousness out of my head.  Even after nearly seven years it still amazes me how simple things can make such a huge difference.  Even simply adding RP to a post on Instagram to remember lost babies makes it feel slightly better.  RP is of course dangerously close to RIP but in this case it means Red Panda(s).  When our children heard they may be getting a long hoped for baby brother or sister (“we would like a brother please”) we gave them the chance to name them.  Naturally my animal mad son chose the name Red Panda after his favourite animal (after giraffes but Giraffe would be a silly name…).

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Even though Red Panda only made a handful of weeks, they were wanted, we spent a great day together shopping while planning all the bits and pieces that needed doing ahead of their arrival and it’s important to remember those fun silly times rather than focusing on the sad outcome.

It’s not clear whether Red Panda would have been Red Pandas, the last scan (before the last scan) seemed to suggest the possibility of two heart beats before confirming there were none.

This contributes to the sense of confusion over what we are mourning in a way that we didn’t have to work out with our sons.

I’m not sure where to go from here so I’ll end the post for now.  It’s a start though and that helps.

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