A post in honour of Hope and her mum, Sally

You might remember me mentioning in a previous post that I met another bereaved mother a few weeks ago at a focus group I attended for Sands. We were there to provide feedback on the organisation's support literature. I brought the raw perspective of a newly bereaved parent, and Sally brought the wisdom and experience of someone whose baby (also her first child) died four years ago.

Sally's little girl, Hope, was stillborn at over 40 weeks gestation - a full term, healthy baby. Hope died in the most tragic, regrettable, and preventable circumstances, while her mum was in labour. The incompetent midwives had sent Sally home from hospital numerous times, not taking seriously the concerns of someone they obviously saw as a typical nervous first-time mother making a mountain out of a molehill. I'm sure they thought they'd seen it all before. Go home and wait, they urged. You'll be better off there. Except that Sally wasn't better off there. Some time while she was at home, scared and wondering what the hell was going on, and waiting for the midwives to give her the magic green light to come back again, Hope's heart stopped beating. Her mum had developed an infection during her prolonged labour that travelled straight to Hope's safe space. Hope died. She should not have.

But I don't want to tell Sally's story for her. She does this herself, with all of the intense emotions you would expect, but couldn't possibly imagine, on her blog: Tuesday's Hope. I emailed Sally recently, after she generously gave her details to me, yet another stranger, who'd just begun walking the same road. I hesitated in contacting her, afraid that she was just being polite, and that really the last thing she needed was to be taken right back there, to the coal face, where it all began.

I needn't have worried, as it turns out Sally is somewhat of a 'mentor' to many newly bereaved parents, mostly as a result of that incredible blog, and the community she has built along with it. She offered me the chance to read it, and it is not an overstatement to say that doing so changed my life. I read in her words so much of myself, and by the time I'd gotten through all four years of posts I felt like I knew her like an intimate friend. She had read my heart, and uncannily she and I have written of so many of the same feelings and experiences.

Please visit Sally's blog. Please read her story from beginning to end. I spent 48 hours last week pouring over every word she'd written, eyes stuck to the screen like an addict. Her story is so compelling, and her writing so evocative, that I couldn't believe it was not some kind of fictional tele-movie. I read Hope's birth story on the edge of my seat, praying for a happy ending, even though I already knew where the story led. I cried for Sally and for Hope, and the sheer waste of this perfect baby's life. And then, following the birth of her two subsequent, living babies, I cried tears of sheer relief and exhilaration for Sally and her family, culminating in my absolutely sobbing my heart out watching this video of her little son's joyous, healthy birth.

Of course, I hoped when reading Sally's story that I'd get to the part where she finally got her happy ending. I hoped that I would read of the time when the pain of losing her first baby went away. I wrote in my email to her:

I'm afraid you're going to say that while it is wonderful and joyous and incredible to have the gift of a living baby, that the pain of losing Hope is still there. That it never goes away. Because that's what you are going to say, isn't it? That this is my tragedy forever. That the image of my poor little boy's dead body, that I was unable to protect, will be forever etched on my mind. That even should I be lucky enough to have another baby (and I have so many doubts this will ever happen), I will still look at that new baby's face and think of all of the things my Max missed out on. 

And of course, in so many words, this is exactly what she said. And on her blog she still says it, day after day. Every day she lives with her beautiful family, no matter how grateful she is, is tinged with the sorrow of what might have been, or rather, what should have been. Because Hope did not come back with the birth of her subsequent children, just like Max will never come back with ours. As Elizabeth Cady Stanton has written:

Nature never repeats herself, and the possibility of one human soul will never be found in another. No one has ever found two blades of grass alike and no one will find two human beings alike.

The children that came afterwards for Sally, and that I hope will come in the future for me, are not the babies we lost. I wonder how many times you have to remind yourself of that during a new pregnancy?

Any living baby we have, after the catastrophic loss of our first, is an entirely new person, with his/her own gifts, own promise, and with whom we'll share a completely different relationship than we would have done with our firstborns. Not a lesser relationship, mind you, but a different one. A changed one. Eleven living babies couldn't make up for the one tiny person lost. And neither should they have to. Our subsequent children have suffered enough of a tragedy even before their birth - the loss of a sibling which we have already grieved for them, on their behalf.

I imagine that creating a new identity as the mother of a different child, and a new relationship with that child, brings up complex issues that play out in big and small ways, not only in the obvious comparison you will probably make between your experience of a new pregnancy and your experience of the last one. Then there are the seemingly endless questions about how you organise the practical concerns of your every day life. For example, if you are lucky enough to have a living baby after losing your first, do you use the baby things that had been set aside for your dead baby?

I feel a bit superstitious about that, like it would be the wrong thing to do. I feel very protective of the fact that the baby things I have belong to Max and Max alone, and that any new baby would have to have his/her own things. Of course there's no right or wrong answer to those kind of questions, you just do what feels right for you at the time. Sally writes about all of these seemingly-small details, and describes how she managed them, and what she decided to do, which has been so very helpful and reassuring to read.

Sally and I have been emailing back and forth for a week or two now, and given that we live fairly close to each other, might meet up for a coffee or to go for a walk and chat in person some time soon. I am so glad to have met her that day, and so grateful for the generous way in which she has shared herself, her daughter, and their story with me, and now, with my friends and family too.

Heartfelt thanks to you, Sally. I am so sorry we had to meet this way - the worst of ways - but I am not sorry that we met. Thank you for reaching out to me. I can't tell you how much it means.

Baby loss blogs

When Max first died I scoured the internet looking for the stories of people who were also going through this pain. I found a lot of information on neonatal death, and quite a lot of news stories of babies who had miraculously survived, but googling (is that a word?!) did not bring up much in the way of blogs or personal stories, which is what I desperately wanted to read. I needed to know that someone else had felt like this - that it wasn't going to kill me, or perhaps, that it would. Either way, I needed to hear from someone who had been there.

I was generously given copies of two books of stories written by bereaved parents, Our Babies Have Died and Baby Gone. Both books were helpful in their own ways, but neither satisfied my need for absolute detail. I wanted a 'how to' guide. I wanted it to be called Death for Dummies. I wanted to know how people live this experience every single day and I wanted it broken into specific subheadings, with clearly defined page numbers I could mentally flip through whenever I encountered a situation I did not know how to manage (which has pretty much been constantly since Max died!).

For example, I wanted to know exactly what they did when they woke up in the morning and had to remember all over again that their baby had died. How could they ever eat breakfast again with that kind of sickness in the pit of their stomach each morning? I wanted to know how they coped when they went to the supermarket at 10am and saw aisles full of women wheeling their babies around blissfully ignorant of the knowledge those babies could be snatched away from them in an instant. I needed this minutia because although I know a lot of people who've been/are pregnant, not even a single distant acquaintance, friend or relative of mine has had a baby die at birth. At least none that I'm aware of. I still can't believe those odds, you know, that I have been the only one out of every single person I've ever known to have drawn this fatally short straw.

Since then I've done a lot of reading (that's an understatement), and I've been thankfully led to some blogs written predominantly by mothers who have lost babies under a variety of circumstances - miscarriage, stillbirth, SIDS, prematurity. I'm sure there are many more, and I'm always on the lookout for them, but there are a few I read regularly that really resonate with me. They inspire and inform the thoughts that I record here and encourage me to believe that every lost baby's story is worthy of recording, and that our voices as bereaved mothers, and those of our babies who will never be able to speak for themselves, deserve to be heard.

One thing that has amazed me in general is how eloquently many of these mothers write of their experiences; how they never run out of words to express how much their baby is loved and missed, no matter how much time has passed. Many of them have, fortunately, gone on to have other babies, and the most beautiful part of that is watching them learn to incorporate their lost babies into their new families, and witnessing how they navigate through the grief, guilt and uncertainty to parent another child. It is not bittersweet to read of the daily updates of their babies, despite being without my baby, because I know they've been where no parent should ever have to go. They know. And they are all the more present for it, living in the moment. That's how I want my life to be, and I work towards this every single day.

Reading about the intimate details of other people's lives like this is, of course, confronting. Sometimes it is uncomfortable. But always, it is valuable. I don't know any of these women personally, but at the same time I know so much about them and their innermost thoughts and feelings. It's a weird paradox. Mostly, I follow their blogs as a silent witness. I'm not a commenter or a participator in online communities, usually because anything I could possibly have to say seems so trite in response to the outpouring of a person's heart and soul. I know this is silly because I know they probably feel like me and would just like to know they are being heard; that their words are having an impact and making people think and feel.

Sometimes when I am reading these blogs I feel selfish because at the moment I am not sharing my blog with the world, but have only invited a handful of people to read it. I feel like the least I could do is offer an insight into my own heart in return for the privilege of seeing into theirs. One of my friends mentioned to me that it sometimes it feels voyeuristic reading my blog - to have this window into my soul and to not be offering any kind of return communication, and I guess it is strange to be part of what is essentially a one-way conversation. This has made me think that I should make an effort to respond to the blog posts that move me or affect me, to let the writer know that their words have been received. And so, with that spirit, I encourage anyone reading my blog to shout out and let me know that you're reading. I think the building of a community in this way is one of the greatest things that good blogs can do.

I did make the effort to personally contact one blogger a little while ago, and I'm really glad I did. Tam, from Nearly Not Quite wrote this amazing post a little while back that I stumbled across after someone in one of my Facebook groups posted a link. Tam might as well have reached into my heart, pulled out the words, and dumped them on the page, so much did she express exactly how I felt. It was uncanny. I felt compelled to write and tell her how much her post had meant to me, and how much it had helped me make sense of so many thoughts and feelings. She took the time to write me the most beautiful reply, full of reassurance and advice, which I have kept and printed so that I might look at it often. She's getting quite a following and rightly so. She has the ability to take insights from own her own very personal experiences and turn them into universal stories. It's a real gift. Tam's beautiful daughter, Ariana, lived for four sweet days, and her impact, as you can see from Tam's blog, has been profound and long lasting.

Tam's email came soon after I had dealt with a couple of really negative, aggressive reactions to the piece I published on MamaMia the week of Max's due date. Although I had received such an outpouring of support that far outweighed those minor negative reactions, it was of course the judgmental ones that have stayed in my mind ever since - the accusations of my friend, especially, that have caused me so much distress. I asked Tam for advice. If we are to grieve with everything we have for our own sake, and the sake of our relationships and our future children, I asked her, how did she think we should do so when the very expression of that grief is subject to the judgment of some who are simply unable or unwilling to empathise with our sorrow?

I didn't expect her to have the answers, but I really needed to pose this question out loud: do I keep these powerful feelings and experiences to myself in order to protect my heart, or is it my responsibility, if I can, to share them so that others can feel less alone? This is a question that I'm still grappling with, and that I have no easy answer for.

Tam's response, however, was so thoughtful, and so encouraging, that I asked her would she mind if I shared parts of it here. In response to these questions from a total stranger she gave so much thought and so much feeling.

She wrote:

I am no expert on grief. What I will tell you though is that I believe with all of my being that there can be no worse loss than the death of a child. There can be no relationship more sacred, no bond more precious than that of a mother and her baby. To have that torn away is hideous. Grief doesn’t permit hiding. If you try and limit your grief, if you try and dress it up and make it more tolerable for those around you, you will drown in it. 

In the past 2.5 years we have lost many, many friends. When Ariana died I promised to myself, to her and to my husband that I would feel her loss as deeply as she made me feel it. For all the days of memories I was missing out on creating I was going to grieve her – my daughter, she deserved my grief, my tears and my howling rage.  

Regardless of public opinion four days didn’t give me less to love and mourn, rather four days gave me an entire lifetime void of the milestones and hopes and dreams. Is that not worthy of the depths of despair? Only six months has passed by since your wonderful son Max passed away. ONLY. SIX. MONTHS. And as you approach his due date, as you face your friend and her newborn, as you face the rest of your life without him – Only six months has gone by. I would expect your grief and emotion to be extreme at this point.

I could have just kissed her at this point. Though I didn't do it consciously, I had also made a commitment to Max that I would feel his loss as deeply and profoundly as I could. I had promised myself that I was going to take every emotion and feeling Max brought to me and wear it proudly and courageously, no matter how ugly it was, for it was part of the legacy my baby left me. I've written before of my feeling that grief and despair at someone's passing is just another manifestation of your love for them. And what about love is there to be ashamed about, no matter how it is expressed? My answer is nothing. Nothing at all, except that some expressions of love are less socially acceptable and others for a variety of (usually selfish and short-sighted) reasons. You only need to look at the government's response to the issue of same-sex marriage to realise this.

Tam assured me that there was no right way to grieve and no formula to follow, and that it was not my responsibility to temper my grief so as to avoid offending others through my expression of it. 'You can't do this wrong,' she said. 'Sure, people will tell you you can, some will suggest you are, but you, only you can know the journey you are taking'.

She was right in saying that publicly acknowledging the gamut of emotion that follows the loss of a baby leaves you open to attack, but she was also spot on when she wrote that:

those friends who know your heart will stay. They will give you the space, they may fall back a step or two while you ride the waves of grief, but when you think you’re going to drown you’ll see them on shore, and that will center you again.

That sentiment could not be more true, and the image of my closest friends waiting patiently on the shore for me brings tears to my eyes. I know it must be hard for you to watch me drowning, but thank you, thank you so much for not jumping in to save me, for not forcing me to swim against the tide just because it's too uncomfortable for you to bear witness to this suffering. Thank you for just watching lovingly from the shore and letting me swim as deep in this sea of grief as I need to, and for trusting that I am strong enough to come back up for air. That is the ultimate kind of love - to simply bear witness along my journey and wait upon the sand with a towel to dry me off when the stormy sea spits me back out. That's all I want.

Blogging gives me a way to share the intimate details of this journey with you, and perhaps one day with others. You can see some very strong and courageous young women sharing their stories on the blogs listed below. I think you'll benefit greatly from reading them. And do let those girls, and me, know that you're on our pages listening to us speak our babies' names.

Oh, and please let me know if you have any blogs to add to this list. I'd be happy to add them, and even happier to find new ones to read.

Cora's Story
Dear Stevie
Still Life with Circles
Nearly Not Quite

Still life with circles

There is a woman called Angie who blogs about the death of her baby daughter, as well as the lives of her two living children, at Still Life with Circles. Yesterday, she wrote a post about her son - born after the death of her daughter - and her complicated feelings of watching him live and grow alongside her knowledge that he, too, might die. It's a beautiful piece, expressing so many feelings that I can only, at this point, fearfully imagine. 

You can read her post here, though I've put a screenshot sample below. If you follow the link, scroll down a bit to see the article.