Five years ago, on 26th February 2018, my first book was published. As a lifelong habitual writer, this was never something I intended to do. I never considered publishing a book and never imagined putting something so private out into the public for anyone to consume. So, why, then?
Well, motherhood made me feel responsible for sharing my honest account with other folks who may need that. The isolation of having a baby in intensive care, whose survival was uncertain hour by hour, is palpable.
Sure, there were folks you could talk to, but many well-meaning would stick a knife into your belly to say ‘the right thing’. Sometimes there was nothing to be said. The best support came from those going through it themselves, who were right there in the thick of it—the most harrowing ‘rollercoaster’ where survival is not guaranteed—nothing is.
One Step Forward, Two Steps Backis an intimate insight into such a journey—mine, with my child born when I was just 25 weeks into pregnancy.
This book needs a revisit from my side. I admit that it editorially falls significantly short. Much professional experience has been gained in the five years since publication. I came from the experience scathed, and the initial years following discharge from the unit were complex—PTSD didn’t hit immediately, but it did hit hard. I can’t go back there yet. One day I will. So for those who pick it up, be gentle—this was my first, and the experience eviscerated me.
My first was in 2004, a spontaneous natural miscarriage.
My second was in 2013, a missed miscarriage that required medical management.
My subsequent pregnancy ended with extreme preterm natural birth in 2014.
Number four was in 2016, another preterm birth, delivered by emergency caesarean.
2022, another missed miscarriage. I’m currently in the limbo phase of knowing my baby is dead inside my womb. I am waiting for contractions and birth, referred to medically as ‘expectant miscarriage’.
Does that make you uncomfortable? Me using the term ‘birth’ instead of ‘miscarriage’? Does it jar to read ‘contractions’ instead of ‘cramp’?
Some pregnancy and loss terminology has raised personal discomfort since my first. Since I was able to directly relate through lived experience what these words mean, and while much has changed in the professional medical approach to supporting parents through these situations, there are still these underplayed words that almost mute and downplay the experience that a body and mind go through with pregnancy loss (the death of a baby). From my personal experience (and every one is different), ‘mild to severe cramping’ (when the physical process takes hold) is not cramp; these are contractions. Miscarriage is labour. Miscarriage is birth. Miscarriage is still birth. Except, the pain is extended beyond the physical.
Even now, in 2022, it feels like we’re not supposed to talk about these things. Not in any depth anyway. It’s all hushed and quietly ushered into another room. Door closed. Keep it for a support group (at most). I use the term ‘talk’ loosely, as I’m not particularly a talker. I process better quietly, introspectively, creatively and practically than with my mouth or too much external involvement.
A couple of weeks ago, I witnessed my baby actively bouncing around inside my uterus. The flutter of his tiny heartbeat, a symphony of life in black and white. This week, he lay still. There was no flutter, no activity, no life. Cradled inside my uterus, my baby is dead. Baby? Does that make you uncomfortable? Would foetus be better? After all, that’s just a bundle of cells. What about ‘pregnancy tissue’ or ‘products of conception’? Then we can forget about the fully formed central nervous system, circulatory systems, the (recently) rapidly growing brain, organs, heart… it’s just a foetus…
No. He’s my baby. And I can’t stand the disrespect of him being regarded as anything else. My daughters have given him his name, Averey. 🖤
I now try to let such days pass by. There’s a day for everything, isn’t there? It’s impossible to acknowledge them all, thoughtfully, every year.
This year though, I’m dipping my toes in to share a little on the messy, sticky web.
For the lifetime of my first premature baby, I have struggled to acknowledge Prematurity Awareness without also acknowledging baby (and infant) loss.
I lost two before my two survivors.
Every birth affected me profoundly. Even the first, which I readily admit was a pregnancy I didn’t want. Yes. I admit that. I wasn’t ready to be a mother. I wasn’t in a supportive relationship. I was in an awful state of depression. Even with that, I still grieve for the life that formed inside my womb, those rapidly multiplying cells that suddenly stopped. I remember the pains ripping through my abdomen. I recall the loss as intimately as the babies I actively (desperately) tried to conceive years later.
The second pregnancy (baby) was very much wanted; every moment her heart beat, and every moment after — when it fell silent — is preciously held in my soul. My womb remembers her place there. Those horrendous words at the ultrasound, “I’m sorry, there’s no heartbeat,” still haunt me. Days of her silence within my body, knowing she was dead and willing her heart to (miraculously) start beating again, wishing for a mistake, they missed her fluttering. There was no mistake — her labour and birth in that silent hospital room and everything after is etched in my bones. The love is agony.
I didn’t trust my body. I felt betrayed by the perceived failure to protect and nurture the life within it.
My third pregnancy was riddled with anxiety. Words are frivolous when even professionals can’t give the answers. There’s no reassurance anyone can offer, just a wish for their life. Their existence. Hope through the torment and desperation.
My third child was born alive just 25 weeks into the pregnancy. The Neonatal Intensive Care journey that followed was another world entirely as was finally bringing her home. Writing about those initial four months was cathartic and not something I really planned on doing — it just happened and became something that I hoped may help other families thrown into that world feel a little less alone. It can be a deeply isolating experience — having a very premature / sick child — and the ongoing battles, fighting their corner and protecting them, making arduous decisions. All this carries on after they’ve been discharged from the unit — at least those fortunate enough to survive.
My last pregnancy ended when my baby was born at 28 weeks gestation. That Neonatal Intensive Care Journey was another experience altogether. Medically it was smoother, and the surroundings, staff, routines and procedures were familiar, comforting (in ways). It was no less difficult — additionally so with another young child to care for — a toddler who was still at risk of things such as RSV, and this birth like the one before was also bang-smack in the middle of winter. My soul was ripped down the middle — and I mean utterly eviscerated. I was a walking, talking, gaping wound that appeared on autopilot. And I don’t think there’s a way for those cracks ever to be restored.
I’ve accepted it all, each of those journeys, the losses, the trauma and the toll it took on our family.
I have let go of the crippling guilt of events I had no control over — advice for life. Learn and let them go.
So, November 17th is World Prematurity Awareness Day. It means something a little different to those who are aware through their own experiences.
I published my first book on my first prematurity survivor’s NICU journey. Having my children gave me more than I can ever put into words. They are my reason to not wilt quietly in a corner, my reason to speak up. They are my inspiration, my pain. They taught me a love that I never knew and so much more. They are my reason to keep going and try to set a positive example of self-worth even when I feel entirely worthless. My children are worth so much more. (All our children are.) They continue to do this every single minute of each day because they exist — against the odds (which were very beak at points).
I’m not going to spiral into talking about the impacts of the pandemic on all of this. It’s hard to refrain because it has had an impact. And knowing how tough those journeys in NICU were for families prior to all of this, let alone now. For those (medical staff and preemie families) having to manage those additional risks and contend with vaccine refusers and conspiracy theorists….
Anyway, it matters. Our actions have consequences that we cannot imagine.
I’m babbling now and trying to stem the flow so, here I sign off my (public) acknowledgement of World Prematurity Day 17/11/2021.💜
Updated cover for ‘One Step Forward, Two Steps Back‘— May 2021.
New Cover!
March 2018, working on and releasing this book was my first time venturing into publishing independently. Being so intimate, I didn’t consider sending proposals to publishers. It could be said that this was my baby for my babies. I’ve always been a writer, but publishing was a way for me to show an example of fearlessness and gratitude to my girls, a lesson that they have taught me, with so many others.
On this, I did everything solo; writing, editing, working with feedback from my very supportive pre-readers, formatting for digital and print, cover design, promotional material and publishing. It’s effortless for those who don’t understand the labour and learning that goes into self-publishing (let alone doing so with something so profoundly personal) to dismiss those who choose that route, like myself, as amateur or playing a vanity game. That could not be further from the truth for many writers who choose to self-publish or join forces with small press’. I touched on this a little recently; https://clanwitch.com/2021/04/06/publishing-which-way/
It’s been three years now since ‘One Step Forward, Two Steps Back’ was released, and there are a few niggles that I often think about changing.
The first is editing. This was my first time editing something at this length, a piece that was (is) as intimate as a diary, journeying through a very traumatic time when it hadn’t even resigned itself to the ‘past’ yet. My heart and head were still sore. On top of that, I can admit that my skills have developed since this publication — I would love to go back and improve. For now, though, with so many other commitments, the past will have to wait, maybe one day. Truthfully, it’s a place I’m not ready to re-visit.
The second is that I’ve never been fully happy with the cover, which I have re-worked and updated. The image of the dandelion, particularly when seeding, has always been one in nature that I find poignant and inspiring. This image, this flower commonly regarded as a weed, represents so many ideas; resilience, strength, perseverance, endurance, determination, life cycles, and innocence. Pairing this with the rainbow’s significance in parenthood (symbolic of a child born after loss; the joy after the storm).As simple as it may be, I love the intertwining of the seeding dandelion head and rainbow. The fit with ‘One Step Forward, Two Steps Back‘ feels right.
Clan Witch & Word Refinery 