#babylossawarenessweek – Baby loss and the high cost of awareness raising

It has been a very busy, positive and at times trying week with so much activity by charities, health care professionals, politicians and bereaved families working together to raise awareness of the issues around baby loss and improving bereavement care.

It also marks the first time going public at work about the long lasting impact of baby loss. Some of my colleagues already knew but this was sharing my experience and insight to the whole department at every level.

Until I saw the responses I had no real understanding about how much of a big deal it was seen to be. I’ve been doing this for a while so I forget how jarring it is to hear these stories until I see the pained and horrified reactions.

It also saddened me to find some of the reasons for not sharing their own experience with others were for fear of damaging their reputation or even career by seeming unprofessional in some way.

It’s been surprising and heartening to see the overwhelmingly positive reaction to the blog, cake sale and film from a different audience to this blog. I tailored the approach and language accordingly so it was still a surprise to me to get some of the comments about how brave and honest it was.

Regular readers will know how mild that post is compared to some of my earlier posts

It did what I wanted it to do. It opened up conversations about baby loss and gave people the permission they felt they needed to talk about their own experiences. Some were mere months ago and others decades.

I’m aware part of my zealousness has much in common with the righteousness of an ex drinker or smoker. Having gone through what I have I am ashamed of the way I failed to support those close to me when they lost their babies through ectopic pregnancies.

Part of my awareness raising comes from trying to right that wrong and make sure others don’t do the same to their friends and loved ones. I had conversations with people that had done the same and through the blog, through conversations and honest answers had a better understanding of the long lasting impact of baby loss. With that understanding came the desire to look for ways to help their friends, family and colleagues.

I’ve been sceptical about the value of cake sales but it proved an effective Trojan horse to get people to the stall and asking questions about what we were doing. Some came to us because they had read my blog or seen the posters, others just saw cake but each visitor got something more be it reassurance that they could be free to tell their story if they wished or a greater understanding that grief has no expiration date.

The fingerprint tree provoked an interesting reaction with some people feeling unable to add their print at this time. I have left the option open for people to come to me or come to them so they can add it at a later time.

The free screening of Still Loved showing managed to get five viewers and clearly had an impact. There were tears but due to technical delays people didn’t really hang around afterwards to let me know how they found it.

I’m glad I took a week off from work to do this as it showed me to focus without (work) guilt. I needed permission to do it because it is an odd thing to do. It’s a week off I could have spent with my living children or evenings I could have spent with my wife but she understands my need to do this and has supported me in both the activism and reconnecting with friends.

In a way it’s me taking time off to spend with my lost sons, having the space to talk about them and the experiences to encourage others to share, help people understand and ultimately make things better in their names.

It’s allowed me the time to catch up with friends and family and naturally seeing them involved talking about what I’ve been doing with my week, blogs, cake sales, film screenings, two twitter chats, physically attending a late evening Parliamentary debate I could have watched at home…

Because my friends and family know me they listened to all of this making the appropriate noises until I stopped speaking long enough for them to get me to answer a simple question: “How are you feeling?”

#bemyfriendjess of the formidable blog The Legacy of Leo has written her own piece on the emotional cost of this sustained and intense level of activity and you should read it before considering my tuppence worth.

No-one would do all of these things if they had a choice. None of us wanted to be called brave, courageous baby loss warriors waving awareness banners tearing ourselves into small bloody strips. We want our babies to have lived.

Telling the stories of our lost children and experiences is crucial to awareness raising but for me I’m aiming for the point where I’m no longer called brave for talking about my sons. I want it to be as acceptable as talking about my live children. My stillborn sons lives were short but they did live.

Each story and sharing stories with others pulls us back into that time and place of some of our darkest moments. The positives of our contributions to this week and beyond are underpinned by the knowledge that we are doing all of these good things because we have babies we didn’t get to keep.

On the way to work on my week off to show Still Loved I was reminded why I was doing this and in that moment I started to cry silent tears. In those brief seconds I wasn’t on the tube I was back in that hospital room having a cold cuddle of my sons and kissing their tiny, cold heads and fretting about if I was holding them right.

After the tech faff of getting Still Loved to work in the conference centre I sat down with the five that had come to join me and saw my life echoed in the stories and images on screen and I started to tear up again even though this is the 4th time I have seen the film and knew what was coming.

It reminded me why my activism and blogging collapsed after the last Babyloss Awareness Week when the cumulative effect of exploring the facets of my and others grief over lost children threatened to overwhelm me particularly coming in between my sons’ fifth (still)birthday and my father’s death. Something had to give and there is no shortage of bereaved parents to pick up that torch.

The danger of focused, intense periods of campaigning like this is what happens at the end? Where can all that energy go? With this year I can be proud of raising over £548 for Sands and starting conversations at work about baby loss. This all lays the groundwork for a shift in perceptions as well as working up plans for a bereavement support and buddy network to offer anyone affected by baby loss someone to help whatever point in their loss they may be.

But for now, that can wait until next week. Now, I will have a little rest before the Wave of Light and my return to work before my sons birthday. As in keeping with tradition we go and do something fun with their siblings as we would have had they lived.

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