When Awareness Raising is Heavy Hearted | Baby Loss Awareness Week 2017

Despite being so pleased with the range of coverage Baby Loss has gathered this week, it’s also really really hard. It seems a lot of people in the Baby Loss community are incredibly heavy hearted whilst being really pleased that we seem to be getting somewhere with having the much needed conversations in the mainstream. Maybe it’s because we are a bit further from our loss, a little less desperate to have it acknowledged, more quietly accepting of our pain, or that progress feels too slow and you find yourself wondering “why didn’t this happen before my baby died” or perhaps you are crushed by the overwhelming responsibility an awareness week gives you.

You know, I don’t want this life. I don’t want a blog, award nominations, being invited to Facebook and blogger events, being quoted in the Guardian. I don’t want this. This wasn’t my #lifegoals. This was thrust upon me. When I was asked at the age of 5, 10, 15, 20 and 25 what I wanted to do, what my life aspirations were, I never once thought “you know, I think I’d like to write a semi successful blog on Baby Loss”. I wanted to be a lollipop lady (for real), an archaeologist, a photographer, a psychologist, a mum. In that order, at those ages. But as they always say, I wants, don’t get.

Maybe I sound bitter. Probably because I am. Because if a fantastic week of baby loss awareness and coverage does anything, it reminds you that your baby died. Not that you really needed reminding. It also reminds you exactly why this is your “hobby”, the way you obsessively spend your days. Because it wasn’t just your baby. Their baby died too. And nothing ever makes that acceptable. So you fight.

Everyone’s fight is different. We don’t all blog/fundraise/campaign. We all do our own little bit in our own little way. And it all adds up. But whatever we do it’s to either survive ourselves and/or make sure other babies survive too. Maybe, your baby. Because, if I could have done anything after Leo died, it would have been to make him the last one. But more babies have been buried next to him. We have seen friends mourn their own babies. And there’s not much more that can bring it home that this won’t stop unless we do something than witnessing it all from the outside.

No doubt it’s boring for some now. Even people who started interested. A bit of the same thing over and over. The constant plea for fundraising. The relentless dead baby chat. I wouldn’t be surprised if people have unfollowed it all. No wonder friends just disappeared. After all, just desperately trying to save lives over here. Desperately trying to raise money to fund research that drives public health campaigns that literally stops babies dying. Its hardly the party life.

If I’m honest, outside the deep sadness I’ve felt this month at missing my first son, and staring at second wondering how we got so lucky at the same time – I feel like I’m increasingly talking to no one, echoing in the chamber of Baby Loss parents, and not sure what good it’s all doing. Little feedback from it all just feels isolating. Somedays, I’m fine with our lot, our little groove and our friendship circles. The circles that are 90% dead baby club. Surrounded by people who have true understanding and allow us to be however we are. And then other days, I look up and wonder what we did so wrong to make everyone disappear.

So I guess what I’m trying to say is, if you are reading this, and feeling bored of our relentlessness on the dead baby chat. Please remember we never asked for this. We don’t want it to be our reality. But we are trying our damn hardest to help somehow. In small steps, but help at least. And sometimes it’s exhausting and you just want someone else to run with the baton for a bit. To do it for you. To have your back. To be a friend. To give you a hug. Drop a text. A comment. Jeez, even a friggin like. Just something to make you feel like you are getting somewhere and that you are supported. Because it’s hard. It’s hard reliving that day, over and over, fighting against it to try and help and never really being sure if it’s enough. Sadly, it’ll never be enough. That’s the cruel reality of it all. The guilt. You can’t ever counteract it enough.

I didn’t set out to write this blog (rant). I set out to acknowledge that this week is hard for those who have lost a baby. Some feel able to get out there and wave the flag. Some can’t. But it goes in circles, and we all prop each other up and pass the baton around. Deep down, we are pleased the conversations are happening. We look for the headlines. We may avoid some of the articles. We may read every single word. We are pleased that they are there. But it doesn’t stop it being hard. Hard on our hearts and minds and memories. Because we are raising awareness, whatever that is, of the worst thing that has ever happened to us. We know it won’t bring them back. But in their honour, we try and just make things a little better.

I set out to be gentler, kinder, warmer but I guess some days it doesn’t flow like that and it’s been a while since I’ve written the emotion I’ve felt in the moment. So here it is.

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12 thoughts on “When Awareness Raising is Heavy Hearted | Baby Loss Awareness Week 2017

  1. You have said every word I have felt this week. The isolation, the stopping of comments and even likes. No wonder baby loss is still such a taboo. I stand with you as a loss mama, thank you for sharing, it’s so comforting to be able to say ‘me too’. Thank you lovely xxxxxxx

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  2. You are doing an amazing job raising awareness and keeping Leo’s legacy alive. This blog post really touched me, the honesty is palpable. I am sorry you are in the dead baby club! I am truly sorry you live with sadness and guilt everyday. I’m 29 weeks pregnant now and admittedly, it’s uncomfortable for me to read that your reality has been a reality for so many others. There are so many “clubs” that people find uncomfortable that have an enormous effect on the lives of it’s “members”. I’m in a special club of my own and truly find it hard to accept sometimes and then feel guilty that I can’t be as open to others as some club members.

    The baby loss community has come a long way! My own grandmother lost her daughter (my dad’s twin sister) shortly after birth in 1962. Her experience is appalling but while we have come along way since then, we haven’t in other ways. One thing I’ve learned from my Grandma is talking about your baby is so important and that the people who truly matter will always listen. We always loved to hear stories of my dad’s twin. Leo’s life will always be celebrated by those in your life who truly matter. Love and hugs this week as you brave a very emotional week.

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    1. Thank you so much for reading and commenting and sharing your families story. Things really have changed for the better. Your words are so appreciated. I wish you all the best with the remainder of your pregnancy, xxx

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  3. Please carry on: you may not be able to wave a magic wand and make Leo the last, but the very fact that you can’t do that means that every day/week/month there are more parents joining the ‘dead baby club’ and many of them are helped and comforted by finding your blog and your words. The campaigning and the fundraising are so important, and will make a difference I’m sure, but for me, the words and the comfort of knowing you’re not alone have been so powerful whist coming to terms with the loss of my own son this year.
    If you can, please Keep it coming: you maybe can’t do all you wish, but you are certainly making a difference

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  4. This rings so very true to me. Thank you for writing this. I have lost 2 children and do a lot to raise awareness and talk about the issues surrounding childloss. I often feel like my family and friends are bored of the topic and that my voice is just an echo into the abyss, but I refuse to keep quiet… “Because it wasn’t just your baby. Their baby died too. And nothing ever makes that acceptable. So you fight.”

    Our voices are small but together they are loud.

    I stand beside you.

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  5. Please don’t ever feel like your voice is being lost. I follow your blog as a close friend had a stillbirth (after ivf) and I went online to find some way to understand how to support her.

    I don’t message or comment much on what you write as I have no personal loss myself, and I don’t want to say the wrong thing somehow or offend someone somehow. Simply put I don’t ‘know how you feel’, and I don’t want to seem I am intruding into a world in which I have no place (I hope I’ve explained this well!)

    But your blog is an amazing thing, and you write so eloquently about your life and love and heartache and you are parenting Leo in a beautiful way. Shout his name from the rooftops, blog as much as you want to and never apologise for it. I’d love to stop anyone going through what you and my friend have been through.

    You are an amazing mum and the way you do all this for Leo while raising and loving Eli is inspirational, especially to a mum who struggles to hoover and put the washing on most days!

    Keep your head high and be so proud, we are listening and your voice is so important.

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    1. This comment means everything to me, thank you so much. You’ve said exactly what I needed to hear and you are clearly an incredible friend to try and ‘learn’ from others in the hope to support your friend. That is truly special.

      I absolutely struggle to get the hoover round, but luckily the washing is 100% my wife’s department!

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  6. Haven’t commented before but I have read many of your posts, shared by a friend of mine whose baby was still born. I have learnt so much from both of you about how to try and be there for people who have suffered these terrible losses and it has also changed my attitude at work as a paediatrician. For example I was involved with assessing a baby a few months ago whose older sibling was stillborn and what I have learned here gave me the courage to truly acknowledge the mother’s loss and show her that I saw her first baby as a person in her own right.

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    1. Thank you so much for your comment – if really means so much and I’m sure hat because of your efforts, you are an incredible friend and support. It’s so heartwarming to know how it’s also benefitted you professionally xx

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