Introducing Calliope

This little snuggle bug is now 3 months old. After her rocky start she has settled into our family and is back to being a regular newborn. The temperature wobbles have disappeared and that frightening skin mottle is just a bad memory. She’s beautiful and healthy, eats well, gaining weight, and alert.

ID gorgeous smiling baby girl with light brown skin, bright brown eyes, and a little dark brown hair. She’s lying in a bassinet, wearing a Winnie the Pooh onesie.

Her siblings are besotted with her. Bear is 2 and loves her with a degree of unrestrained enthusiasm that requires attentive supervision! Poppy at 8 is old enough to carry her and even sometimes walk her to sleep. Nemo didn’t think they could fall as hard for any baby as they did for Bear and has discovered that joy of your heart expanding.

Calliope has discovered she can interrupt any activity and melt any heart simply by smiling. She has the most adorable dimple on one side. She loves to talk back and forth with her little burble and coo. When she’s interested in chatting she’ll lift her eyebrows in an expression of intense surprise. She is happy for a time in her bassinet but loves to be carried in a wrap, snuggled close to your chest. Sometimes if she’s sad and crying she’ll stop and listen if you sing to her. If she’s very upset, her favourite song to calm down is Aretha Franklin’s (You Make Me Feel Like A) Natural Woman.

I cannot believe how incredibly fortunate I’ve been. Back when I was 14 I realised that I deeply wanted children. So many obstacles came between me and that dream, the collapse of my marriage, my struggles with endometriosis and adenomyosis, coming out from a hostile religious background, chronic illnesses, poverty, unemployment. To be unpacking the carefully saved clothes for the fifth and last child, and this time putting them aside to pass onto someone else is simply astonishing. It’s a very busy, very tiring life but I’m absolutely in love with it. It’s a privilege beyond words to raise these children and I’m very aware how many people don’t get the chance.

We recently put a little money together to hire what Nightingale calls a Baby Whisperer. A lovely NICU nurse with a lot of additional training including in Newborn Behavioural Observation came and spent some time with Calliope. Nightingale and I have noticed that we don’t seem to be able to read her cues as well as we could with Bear – at this age we could pick a number of different pitch cries that indicated hunger or tiredness or discomfort with him, but with her we’re often unsure. The Baby Whisperer came and assessed her to see how she was after the illnesses and hospitalizations. We discussed how she had been showing signs of feeding and touch aversions from the trauma of her treatments. We’ve been gently rubbing cream into her hands during restful moments like when she’s feeding to help her recover from the stress of multiple painful gelcos being placed.

The outcome was really thrilling. She’s recovered incredibly well. She has strong cues, she’s robust, able to soothe herself when a little agitated, not showing any residual touch aversions and only a little feeding aversion. The glitch is more that we’ve been basically trained to be hyper sensitive to her health cues – we’re not very tuned into her different cries but we pick up on skin colour changes with incredible speed and sensitivity. So we’re missing some of her social and emotional cues as a result. In a nutshell, she’s not traumatised but we are a bit! So we’re working on that. Having her so sick, and the hospital response so fragmented and contradictory cemented that we need to be intensely vigilant monitoring her health and advocating for her. It takes a minute to stand that down and switch over to focusing on connection.

So here we are, 4 fabulous kids in the house growing up at a phenomenal rate. Chronically broken sleep. Date nights few and far between. The other day the older 2 kids happened to be out of the house for the night and we got very excited that we only had the younger two to care for and said brilliant! Date night! Cooked steak, lit a candle, and laughed at ourselves because we don’t know anyone who would consider caring for a toddler and a 2 month old a night off. It is gruelling hard work, and there’s times of overwhelm and misery. There’s also a beautiful bittersweet awareness that every milestone she reaches is the last time we’ll have that experience. Daft people who haven’t quite followed the complicated nature of conception in our queer family tell us we can’t be sure we’re done and we never know what might happen. (So much planning and baby math goes into conception for us) We are savouring everything, and so tired we’re forgetting half of it, falling over it in the dark, tag teaming, staggering along in the perpetual dampness of infant care. It’s absolutely beautiful and utterly consuming and I’m incredibly proud of how we’re living it and looking after each other.

She’s beautiful, she’s healthy, and she’s so well loved.

Making a Home

Home from the surreal terror of NICU and into the surreal mix of bliss and boredom that is life with a newborn. We’re exhausted and recovering as best we can. Baby is doing so well, getting stronger and feeding well. Little bear is bewildered by the new addition but very much enjoying exploring the new yard. The house still has many boxes stuffed into corners yet to be unpacked, the carport is a mess of dismantled shelves and tools and craft supplies. The front lawn has largely died while we were preoccupied with the baby, and is covered in pieces of jungle gym and swings yet to be reassembled, and things too heavy for me to move alone like a table with a circular saw.

I didn’t love this house at first. This was not our first choice, we were trying to renovate the damaged house Nightingale bought years ago. When that fell through we had a tiny window in which we could buy a place before baby came along. We applied for a house every week and there were others, prettier ones with creative layouts and ivy growing up the walls that I was in love with. This one was merely available, in the right area and with 4 bedrooms. When we were successful in buying it I was ecstatic and then I cried in disappointment.

I have waited a long time to own a home and I thought we would have time to explore many options and fall in love and it would be romantic. It was instead absolutely exhausting and under tremendous pressure. Sometimes one of us would run into the open inspection while the other lapped the block in the car trying to keep Bear sleeping through his nap, then tag out and swap. Some were insanely expensive, much more so than we’d expect. Some were frighteningly dilapidated. Many lacked basic things we need like a fence. It was an intense time with Nightingale extremely pregnant and unwell.

But we’re here now, in this funny white box of a house, set into a hill, and I’m falling in love with it. It’s peaceful. There’s birds and trees. I drag the sprinklers from tree to tree and patch of lawn to patch, starting to nurse it back to green. There’s a clothes line by the back door and I find peace in the simple domestic tasks after days of wearing the same soiled clothes in hospital. Bear moves dirt from one spot to another. I open a few more boxes every day, start to make patches of functioning space in the chaos.

It feels different to own it. I’m settling into the carport as a workshop space, and I’m not afraid of splashing paint or creating sawdust. There’s so much hard work that came before this and is yet to come but right now I’m in a tiny quiet eddy of time without a school run and work stripped back to the basics, not ready yet to face the world. Just cocooned here, getting to know the baby, the house, letting everyone get used to all  the big changes. Eyeing up the empty spot in the freezer where I keep the spare meals, planning the fortnight shop, changing nappies, tidying away crafts, folding washing.

ID Sarah sits in front of a garden, with very short silvery hair, white skin, and blue eyes, smiling at the camera. I’m wearing a dark blue t-shirt. Cradled to my chest is a tiny baby with dark hair, sleeping in a froggy position and wearing a strawberry outfit.

Soon enough I’ll be the working parent again and my job will be to leave and focus elsewhere. Right now I resent that so much it’s hard to breathe, so I’m focused here. I’m cleaning Bear’s bottles and figuring out where to store the spices and learning where the new chemist keeps the latex free bandaids. I’m incredibly tried and I wouldn’t want to be anywhere else, doing anything else.

Dreaming of the Last Child

Sitting at the ASO Hans Zimmer concert with a friend, quietly crying to the theme song from Inception. It’s so beautiful. I remember the first time I watched that movie, thinking of my friend Leanne who had died, and feeling that she was so close by, just in the next room. That god was only a dream away, was just waking up. I wept then too.

Nightingale and I are expecting another baby. Our last little one, the fifth child in our little patchwork family. We’re halfway through the pregnancy, and while Nightingale has been brutally unwell, the baby is healthy. Much loved, much anticipated. My world, which was once so lonely, is now woven tightly with my family, my children, and my work. Solitude is rare, I am the gardener tending all the growing things, aching in the moonlight and resting when I can in the summer heat.

ID: black and white ultrasound image, profile of a baby’s face at 20 weeks old.

We’re back in the world of hospitals and white water rafting through medical trauma. I remember you being born, Bear; I remember cutting his cord. I remember how hungry I was to hold him, how my skin ached when he cried. The memories are like dreams, hazy and unclear. Underwater in a sea of trauma. I remember stuffing the scream back down inside me, my fingers twisting my fingers into knots, crying in therapy until I couldn’t breathe. Those memories are sharp and clear as glass. 

I remember you too, Poppy, birthed into water in the dim light. I remember you falling asleep on my chest, night after night, pacing the driveway with you in a carrier, held close to my heart. I remember the frozen wordless terror left in my flesh.

It’s exhausting to have children at 40. And yet, my capacity is greater than it has been at any time since I was 18. This is my window, our last window, to bring these beloved children into the world. And while this baby is our last baby, it will not be the last. There will always be other children needing love, food, or a spare bed. There will be strays and grandchildren and friends of friends we take in and take on and love. We are lucky that way.

Holding the dream of the last child with so much love and anticipation. With worry about our housing, about more months of sleeplessness, about money and energy and weaving a new relationship into the family with each of the other kids. We are preparing more this time, building a team, asking the hard questions now, and making time to unpack the wounds. It’s a different kind of nesting to the first child. There are so many beautiful memories and so many dark ones. Tam and Luna float about us, light as moths, brief as butterflies.

We’ll do our best by you, littlest love. You have such a beautiful, imperfect, loving family waiting to welcome you. We have been so lucky in these dreams, and the moments blur together and become mundane and ordinary.

Then some artist fills the world with such beauty and sorrow and grandeur. And I remember the first time Bear gazed into my eyes when I was rocking him to sleep and how deeply moved I was. I remember Star resting her head on my shoulder in the hospital after her knee was torn. I remember getting ice cream with Nemo and debriefing a difficult appointment. I remember bathing Poppy in the backyard under the beautiful old tree. All these moments become framed in something that elevates them from the everyday. I sit in the dark theatre, weeping and grateful I have a heart that can still be moved. Grateful for these precious dreams and memories among the dark seas and storms. One day soon we’ll meet you too, little one. Hold on and keep holding on. We love you.

Heartbreak and peace

I have spent much of my life attempting to understand what it is to be human. In the dollhouse distasteful reductionist language of autism, it would be a special interest of mine. Informed as much by my limitations that made my peers perceive me as less than human as it is by the relentless intellectualism and embarrassingly vulnerable heart to which I’ve pursued the manner. All autistic traits, I’ve since learned, all human ones.

“When childhood dies, its corpses are called adults.” (Brian Aldiss)

Growing up is about both finding and compromising your identity. (Philip K Dick)

I have brought children into the anthropocene. Into an age where they will be unlikely to be able to earn enough to afford their own homes. I have passed on genetics that have loaded the die. Poppy has had two dental surgeries for the same undiagnosed mysterious salivary insufficiency that destroys my teeth. I love children with no genetic link to me who are nevertheless mine, as much as any child is anyone’s, with a thread just as binding and just as fragile.

I have spent years refining my understanding of myself and the world, and years dismantling those frameworks when I fell off the edge of the planet into the void. Years exploring the wilds at the edge of my solitary experience of the world, and years exploring the shared reality of the domestic day to day life. Always polarised, always missing pieces of myself. Finding so many lost souls. Losing knowledge and memory as much as picking up new precious information. Looping the same mistakes over and over while I struggle to understand. Finding my way out of each kind of darkness.

Today was international mud day. Poppy’s school celebrates it and I so wanted to be there. But Bear was sick and couldn’t be out in the cold weather. My heart broke. I thought I would parent differently. I thought I would be there for everything. I work. I have other children. Nightingale has been sick. I juggle and I work hard and I have to let things go. Today hurt to let go. In any group or family, there’s a carousel of who takes the lead, whose event is special, who is sick or hurting, whose turn is next. It’s imperfect and it’s especially hard when coming from a single parent single child background where the answer to that question was once incredibly simple: this one child of mine is the focus. Now there’s more to balance, more complexity, more networks, more regrets. I compromise. Poppy waits for next time.

I resent compromise and I fight it. I sat at a show recently and a young person berated us for leaving them such a broken world and I remembered berating my parent’s generation for that, but I still wanted to say it wasn’t me! I still wanted to take my children far away into the wilds and live off the grid and away from single use plastics and be pure and pristine and at peace in the knowledge we contributed to none of it.

And I think what that would do to my children, the friends and family they’d lose, the opportunities lost to them, the network I’m part of where we care for and contribute to our world. I remember my public health training and the despair of the researchers who found the obsession with individual consumer based environmentalism had consumed everyone with guilt and distracted us all from the giant corporations and their captive regulating bodies that were permitting vast environmental atrocities for profit. I remember that compromise can be holy. It took me so long to understand that. That we remain in the world. That we accept the blemish and the stain. That we participate imperfectly in the giving and receiving of love.

Today I drove for hours through fields and forests, through mist and rain and sun and smoke. I drove to the ocean which was foamy and wild. I played Little Bear’s favourite song with him, which is Row Row Row your boat, and discovered he likes green juice. We looked at two caravans that could function as home offices while our damaged home is being repaired and rebuilt. The world unfurled before us like a flag. People were kind. Bear stomped about in his sweet little brown leather shoes, chuckling at chickens and nesting his head in my shoulder when a dog frightened him.

It was a heartbreaking day. It was a good day. This morning I pulled the car over to cry as the pressure of all my tasks and that horrible underlying fear of letting your children down pulled me into a whirlwind of meltdown. This evening I lit a candle and lay in a hot bath by an open window watching the sky darken. I watched Wallander on my phone and cried at the beautiful music in the credits. I thought about how vibrantly the male characters were portrayed and how distant the females were, passive and beyond reach for us because they are beyond reach for Wallander, loved and pitied and mourned from behind glass. What’s wrong with me, she cries. There’s nothing wrong with you, he replies. He’s right. And yet. How then should she live? Is she still human? Does she still have a soul, or is she what her father has made her?

I thought of how lost we are as a culture about trauma and grief, how bewildered. An autistic might say we have no scripts. What is the etiquette after horror and betrayal? We are bound by conflicting instructions that cannot satisfy: we must move on as if it never happened/we must be broken forever to show it mattered and prove our pain is real. Silent/passive. I think about birth trauma and Bear and the gaping wounds I carry for how he and Poppy came into the world. How I am silent and passive, I have not told those birth stories, I have not painted that pain. Something in me was broken and remains broken. I do not care to bring my pain to the public to defend it against a medical structure founded on the certain knowledge my experience is invalid. There are no scripts. There is lying alone in a bath, weeping when Wallander is kind and hurt. There is the power of naming it, recognising this wounded black beast as my own, however uninvited and unwanted. The ghosts that came with my children.

Parenting is all about living with ghosts. “Monsters are real. Ghosts are real too. They live inside us, and sometimes they win.” (Stephen King)

This is what it is to be human. The complexity and contradictions and imperfections, the threads both found and lost. My friend who died in her sleep with her face cupped in her hand and whose story was far from over. Who fought so hard for her life and to feel alive and not be overtaken by the beige. Too soon and too young and unfinished and unready. This is our life. The violin weeping with me and the dog downstairs shrieking at a rat running along the fence. The unspeakable and the benign tangled.

I lost my art again. I’m careless, I lose it often. I’ve made no art at all in years.  I’ve been hunting for it in therapy, pointing to the unspeakable stories I cannot paint, the blocks that make me afraid of my easel.

Yesterday I moved around the furniture to allow Poppy and Bear spaces in the studio with me, and I set up desk lamps and task lights and turned off, for the first time in 2 years, the overhead fluorescent lights. A chainsaw growl in my brain went instantly away and the space that has been terrifying became warm and safe. I forgot how much the environment mattered, how, like many autistics, I can hear and feel electricity, and florescent lights burn my brain. All the complicated nuanced poetry of my creative blocks fell to one side in the simplicity of shadows and lamps inviting me home. So frustratingly simple. I did not need to speak the unspeakable, I just needed to feel safe in a place where that might one day happen, now.

I stood on the beach today with Bear asleep in the car and the wind wild around me and a gift for grief and loss hidden in my bag and poetry came to me like the sound of her voice in the wind. We are human. We break, and we endure, we tell stories and keep secrets and we are gone far too soon.

Baby has arrived

We have a beautiful healthy little boy, born on Friday by c-section. It’s been a very long, disruptive process of inductions and hospital visits and stays. He’s not yet been named. He’s very beautiful with a full head of dark hair. He makes all the lovely newborn snuffles and snorking sounds. He feels like velvet. Nightingale was able to do skin to skin immediately after birth in the theatre and through recovery. He’s in newborn sleep mode which means loads of naps during the day and cluster feeding and squeaking all night.

ID light brown newborn wearing a blue singlet, snuggled up on a cream blanket. He has short dark brown hair and looks content.
ID black and white portrait of a baby wrapped in the striped hospital blanket and lying on his tummy. He’s looking very serious with big dark eyes.

Nightingale sailed through day 1 post surgery then started collecting a horrible bunch of post op complications. We’ve been stuck in hospital much longer than hoped because of them. She’s been through hell the past few weeks with so many painful procedures and things not working. I’ve held her hand through most of them and we’ve worked hard to protect ourselves from the stupidity and vagaries of the health system. We’ve succeeded far better than I expected in many ways, but far less than I’d hoped. There’s a lot of bad stories and a lot of pain and trauma. Most of the staff have been fabulous, and a few really saved the day by talking us properly through options, or listening to concerns which they thought were unlikely but turned out to be accurate, or protecting our wishes when someone else tried to take over. A few have been so bad we banned them from contact again. It’s so different to Poppy’s birth and yet so familiar. Miraculous and beautiful and awful and dark. We are grateful and relieved and overjoyed and exhausted and hurting and can’t put many of the experiences into words.

Pain is an ongoing challenge, Nightingale has been suffering from pain crises where she is in 10/10 pain, sometimes for many hours and the pain relief doesn’t work. A few nights back she was unable to move or speak for 6 hours while the staff maxed out all the pain relief options without effect. She should still be in hospital but we negotiated fiercely for home. I can nurse her with all the same resources they have the (except of course, someone to take over at shift change), and the stresses of the long stay in hospital have been building each day. The awful food, the hundreds of people who come into the room day and night, the Covid limitations on visitors so we can’t have both our kids visit, the lack of proper titration of pain medication, the way the plans change at every doctor shift change, notes going missing, stretched staff taking 45 minutes to respond to a call bell, the new person not reading the notes and harassing Nightingale for needing pain relief or blaming her for not getting out of bed every day because someone forgot to chart that she has, the ones who don’t understand consent or are confused by anything that’s not 101 typical presentation and keep giving bad advice, the ones who block agency and access to even the basic resources like an ice pack, the constantly having to explain, provide context, build rapport, and ally with every new staff member, the gratitude for things that should be a given, the sheer helplessness of being stuck inside a system with so little power. The costs accrue alongside all the good care and helpful folks. So we’ve finally come home late last night with a long list of medications and things to deal with and some home visits and outpatient appointments.

Everyone has been homesick and missing each other. Our community of family and friends have been looking after Poppy and Nemo. We’ve managed two hospital visit with them both, Nemo is anxious about accidentally dropping the baby, while Poppy is nearly exploding with excitement. We feel stretched at the seams. We’re trying hard to look after all of us.

ID Sarah holding baby. Fair skinned adult with green hair cradling a baby who is wearing a black onesie covered in bright coloured stars.

He’s beautiful. It’s incredibly strange to have a baby I didn’t birth. It feels a little like cheating at times, there’s so little effort on my part to bring him here, while Nightingale’s body has been a war zone. I feel oddly guilty.

I also feel slightly out of the loop. The hospital don’t see partners. They see a mother baby dyad. I’ve been absolutely invisible for most of the process. The same rules apply to me as any other visitor. All the paperwork says Baby of Nightingale. I have to find and store my own meals. I’m often not allowed to use the bathroom in our room but required to go elsewhere. There was a moment in theatre when they needed to take him off Nightingale’s chest and weren’t sure if they should put him in the warmer. I offered to hold him skin to skin myself and they were so startled and flustered and turned me down. The doctor asked Nightingale about her mental health as part of discharge, I’d spent most of the day crying but didn’t flag. We’ve done a fabulous job of protecting the connection between Nightingale and bubs, I’m not quite there yet.

I feel fiercely protective of both of them, and deeply relieved he’s okay, but also jolted by a hundred small experiences that tell me he’s not my son, like micro aggressions that have stacked on top of each other over weeks. I can feel the difference and I can feel the trauma jangling in my bones, the way I’m frustrated with him when the staff are doing something horribly painful to Nightingale and I’m trying to hold her hand and hold him too and he’s screaming and I can’t comfort him so I can’t comfort her. I hoped it might be better than this, we got our golden hour and protected our family as best we could. But here it is. We got the perfect outcome with him. We got a difficult outcome for Nightingale and I. We’ll keep repairing the damage. We’ve got time to grow all the good things. There’s a lot of love here.

Waiting for Baby

Everything in our lives for the past year has been moving towards this point, like a staircase spiralling up a tower. We are in the last days now, waiting. Our kids are enjoying visits to friends and family, while we swing between home and hospital for daily checks. We’ve had a bumpy ride with hospital, some wonderful staff and some hostile and probably traumatised ones. We’ve worked hard to build relationships, normalise seeking consent, and collaborate on the approach.

Nightingale has had a bit of a rough pregnancy, very high hormone levels causing severe morning sickness and some difficulties with low blood pressure and gestational diabetes. As a result we’ve been put on the high supervision pathway, with frequent growth scans, twice weekly diabetes check-ins, and so many hospital appts that some weeks it’s felt like we live there. Every time we attend there’s a different doctor or midwife, and often different contradictory information and advice. It can be very stressful.

Now we’re approaching the due date with pre labour contractions making every day a possible birth day. It’s exciting and tiring. There’s a steady stream of enquiries from folks wondering if bubs has arrived and we somehow forgot to let people know. It’s impossible to make plans, and anytime we can we’re just catching up on sleep.

We went into hospital recently for a catheter induction which was very painful and unfortunately not effective. Nightingale has previously had a c-section so some options they might usually consider at this point are too risky. There’s no signs of distress for bubs or Nightingale so we’re just waiting at this stage. After meeting with the delightful head of the department we have collaborated on a plan to try again next week, and in the meantime go into hospital for a checkup every day. Being able to go home to proper food and good beds has been deeply appreciated and helps a lot with the fatigue. Now there’s a clear plan it’s been a much smoother process instead of each shift change exposing us to a new person’s ideas and values. We’ve denied contact from a couple of staff who’ve been aggressive and controlling, protecting our space and the precious sense of safety and trust needed to labour and bring a child home.

It’s incredibly hard making decisions and trying to weigh up different risks and approaches, often with very little quality evidence to go on. I don’t envy the doctors who have to try and do this for many people every day. Tailoring individual care on the basis of conflicting research, poor quality information, or massive cohort studies full of unmanageable variables is very challenging. Each protocol and policy has unintended consequences and theories and ideas that seem so intuitive, so obviously helpful turn out to be full of incorrect assumptions and focusing on the wrong indicators. There’s so much we don’t know and so much knowledge we lose.

We ride a roller coaster together, and our community along with us. There’s times of deep peace and connection, such hope and joy. We’re ready for them, everything is ready. There’s times of fear and sadness, afraid of loss and regret. We tumble up and down together, riding the waves and watching the stars. Come home littlest love. We’re waiting for you.

Birth trauma

I’ve come home from the dentist today feeling shattered. I’ve struggled with medical appointments since Poppy’s birth. I was not treated well during surgery and that left me furious and frozen in medical settings. I’m very overdue for dental care and have started the grueling process of attending appointments for 11 new fillings. It was miserable today, my saliva thickened and I gagged a lot with my neck extended to allow access to the inside of my top front teeth. It took nearly 2 hours and other teeth are still irritated and sensitive from the previous session.

I’ve never been able to write Poppy’s birth story. Now so many of the details are hazy. I’ve struggled to understand the impact on me and the contradictions in the experience. I’ve felt deeply unreasonably humiliated by my struggles. I know trauma, it’s one of my major areas. I had PTSD at 14. I’ve read the things and been to the therapy and run the workshops and supported others. Somehow instead of creating grace for myself, my experience drowned me in shame. I should be immune? I should be able to deal with this? I shouldn’t feel the way I do. I trekked through a number of birth trauma specialists I didn’t find helpful, froze and forced myself through dentists and pelvic exams hoping I would just adapt. Then turned away from the whole mess.

Lately going to prenatal appointments I’ve run into all these ghosts. Going for a scan and finding myself in the room where they confirmed Tam had died. There’s ghosts of me throughout the hospital, screaming soundlessly and running with dark hair matted and white gown flailing. A portrait of derangement and madness. I sit in appointments, incoherent with rage and painfully aware that I present as rude, distrustful, obnoxious. All my energy goes into not screaming, stuffing all the words back into my mouth, not shaking, not biting the hand that touches without permission, not raving at the language that is so devoid of the concept of consent. There’s nothing left for the smiling and eye contact and apologetic shrug and recruiting them to accommodate us in any tiny way. I’m so tired until I’m sitting there, then I’m so angry and so aware my anger instantly strips me of any credibility or power I might have had in this place. They think of trauma as the panic attack, the victim. I am on fire with fury, watching their every move and listening to every word and seeing ghosts of myself weeping and running through every corridor, abandoned and untended.

So we’ve put aside some money to spend on a good dentist, and today on catching an uber home again because I’m usually too ill to drive afterwards and couldn’t find a lift. She uses the anaesthetic that doesn’t work as well but I’m less allergic to. And she says things like “you’re in control, let me know anytime you need a break”. I lay very still and my tears roll down my temples into my hair.

I come home and Nightingale brings me mashed potato and pasta and sympathy. I’m going to hurt for weeks and it’s exhausting.

I’m talking to people about birth trauma and how stuck and silent and alone I’ve felt. I know better. I know shame isolates. I know hundreds and thousands of other people will have come through something similar. I know how to use art, writing, talking, and research to process things. I know that knowledge doesn’t protect you from experience. I know it’s not punishment. I know self compassion is crucial. And I know it’s difficult to do when no one in the medical environment sees the injury, or responds with compassion. It’s difficult when it makes you feel weak and vulnerable. It takes patience. And a dentist who’s had good trauma informed care training. I wanted to be doing that training by now. Frustration and roads untraveled.

I feel voiceless a great deal of the time about most of my life, in a way I can’t express well or articulate even to myself. There’s been so many changes and challenges to my ideas about my life, my relationships, who I am, what it means and what to expect. Trying to understand late in life diagnoses of autism and ADHD, what they are, what that means for me, my family, my children. The ending of an eight year relationship with the parent of my child. Beloved Star cut contact with all of us last year after joining a church. Getting married, a new baby. Work stabilising and becoming less overwhelming. The awareness in the back of my mind that I’ve been diagnosed with something that indicates I lack social awareness and the resulting severe loss of confidence to speak and own my own story. Lost about how to be authentic and work, navigate complex relationships, parent. I miss having a voice and a community. I put a call out yesterday for help to attend the dentist and got no reply. Covid has not been kind. There are empty gaps in my world and they hurt. There’s so many ghosts.

I have birth trauma. I’m trying to find my voice again. I’m trying to make sense of which stories I can share and how. Today I was brave. I’m hurting. I’m not alone. We’re all alone. It is what it is. I’d rather take the slower and more dignified route to knowledge, through study. But lived experience brings not just the silence and scars, when we wrestle with it, it comes with powerful inside knowledge. When we can speak we break the shame that binds us all. I didn’t think it would happen to me, but it did. I didn’t think I would get stuck, but I did. I couldn’t fix this one myself. But someone like me must have found a way to speak to a dentist and because of them I could get broken teeth fixed today. And tomorrow I’ll pay that forwards.

Mourning Luna

Drums in my head, beating against the thick wall of my skull. We’ve lost the pregnancy.

Waking Nightingale’s teen to tell them, sorry Squid, we’ve lost the baby. Where? they ask, sleep blurred and confused.

Walking into my studio for the first time in months to wrap my book ‘Mourning the Unborn’ for a customer overseas. Then weeping in bed instead of taking the package to the post office. What strange timing, I’ve not sold a copy in over a year.

We find someone safe for Poppy to play with. I buy a bouquet and we bring it back to bed. It is bright and colourful and has the painful cheer of hospital flowers next to the white sheets. We spend the first day alone and entwined, breathing in the loss.

And then, nothing. I try to get through the days.

I’ve lost my voice, my loves, for a long time now. The unbinding of my family, my terrible depression, the building of something new… I’ve been so silent throughout most of it. I rarely share online or even journal privately. I take few photos, write fewer poems. There’s been no art in my world at all in years.

All my life has felt unsharable. The stories have been beyond my ability to put into words. I don’t understand them. They defy telling. I cannot speak because I do not understand. I cannot explain.

My life has been tangled into other people’s lives. I fear hurting others. I cannot share my own experience now without impacting those who share or once shared my life. I never want my words to be a trap or a weapon. I don’t have the strength to manage what might come in with the tide. So I’m silent. Cut off and waiting for I don’t know what. Unsure if this is only for a time or this is just how I am now.

Nightingale is savaged by grief, while I am numb. There was no body in my body, there’s no blood on my thighs, no community to grieve with. I tell friends we lost the baby, who tell me to send their love to Nightingale. The child that was also mine, becomes in death not mine. The miscarriage becomes hers alone. I’m behind the glass, handing out hot water bottles, dedicated and soothing and far more afraid of the impact on her and I, of losing us than I am of the loss we’ve just suffered.

Behind the glass it’s almost like nothing happened, there was no child, no dream broken. The child was not mine. I remember well the black void of trying to conceive Poppy after losing Tam, and I grasp at the relief like a lifejacket. There’s no void here. There’s nothing to grieve. I’m not falling off the face of the planet. I’m a good parent, an attentive partner. I’m functioning.

I don’t talk about it, write about it, cry about it. I don’t want a body to hold or a talisman or a tattoo. I want to hold Poppy and never let go. I want to run from the burning pit where my grief is not clean and pure thwarted yearning, but something ugly and sharp, pierced through with raging fear and doubt. Maybe the baby didn’t come because I’m not a good enough parent. Maybe they’re better off without me. Fertility as the blessing of the divine, the endorsement of the universe of your capacity. All such bullshit and yet my heart labors under the fears.

I can’t help but turn my face from the anguish of possible later loss, stillbirth, a child dead at 4 months or 2 years. The demand that I can handle whatever tragedy might come and still be here for Poppy. It makes me terrified of my dreams because I know tragedy will come, that grief follows love like a shadow. When getting out of bed each day is a torture of pain and mental exhaustion and humiliating incapacity, I can’t afford to risk much more. So, the horrifying traitor thought: maybe it’s better this way.

This is how mothers say goodbye, little Luna. Face turned to the side in rejection of all that you were and represented. Eyes fixed firmly on the child remaining, heart broken by doubts and unworthiness. Numb to the bone.

The brutal mornings become unmoored from the source of the pain. I drive Poppy to school and then collapse sobbing in the car and can’t drive home for hours. Nothing means anything. My heart runs from you. If you weren’t real, there’s nothing to grieve. I build no shrine and hold no memory tight of who you could have been and the life we dreamed of together. You were almost never here, real as smoke or mist, dew gone in the first light of sun. I betray you.

Nightingale is alone and not alone in grief. The primal need of grief is to know it’s shared. I add to her anguish. In the night we are raw and wounded. I turn my face back to the loss, and reach for a key. We watch Losing Layla and I find you there Luna, in the face of the dead child. Grief, pierced through with doubt and shame. I howl in her arms. My functioning evaporates like dew.

We go wander the WOMAD festival, under the trees and the flags, arm in arm. The night is soothing. We get a henna tattoo each for the child, a Luna moth and a moon.

ID: A brown skinned hand with a moon henna design, next to a white skinned hand with a Luna moth henna design.

I buy and finally read Terry Pratchett’s final book, The Shepherd’s Crown. The mere thought of it has been unbearable for years. Now I read it through and I cannot feel anything. My eyes are dry.

I miss all my children, the ones who could not stay, or who left. Everything tangles into darkness. I am dumbstruck, spellbound, silent, paralyzed. I cannot be who I wish to be, who I am. I cannot find comfort in your name. I thought losing Luna would feel like losing Tam, but it turns out each loss is distinct and each grief is its own thing. Everything hurts, and I cannot feel anything at all.

This is what it is. I was once so blasted by sorrow that I couldn’t feel even the wind on my face or hear the trains in the night. My whole world was ash, and I was buried deep beneath it. I’ve come back from the dead before. My littlest love, you’ve pulled me into the underworld beside you. I’ll find a way to kiss your bitter mouth goodbye and live again.

Poem – Connection

After late nights talking, I wake early and creep away from sleeping child into a bath. Reread a journal from 2018 and find this poem about Poppy.

Connection

Late spring evening
She's in the bath, giggling
The wind outside is restless
The air velvet and warm
As the time passes
Something eases like sand flowing
Through an hourglass
The noise goes quieter
And quieter still
The noise goes
Into the silence
We are still
We look at each other
Really alone and
Really looking
And we laugh. 

Losing Rose

Rose is in a terrible place, rarely far from death. They’ve been hospitalised many times since their near death experience in December. There was such a sense of celebration when they came out of hospital and it was so misplaced. Physical and mental health have cycled through chronic crises. It’s brutal.

Rose and I are no longer a couple.

They didn’t come home to me. Nearly dying blew wide every crack in our relationship. Every effort we both made to find a bridge between us was swamped. They proposed and ran from me. All the demons woke up. The only glimpses of peace to be found were when I took myself out of the picture and left Rose and Poppy together on a beautiful autumn day. I hoped patience would heal us but the longer I held on, the further down Rose fell.

So I let go and life took us to some un dreamed of place where the foundations broke beyond repair and for months I woke to the nightmare that they’re gone. The new normal.

Rose found love with someone else, found peace and a sense of safety that couldn’t be found with me anymore. I am so happy for them. I so want them to be okay, to feel safe, to feel loved. I am so confused and heartbroken. They are so confused and heartbroken. Nothing makes sense. We try to make time to talk but every day is torn apart by medical appointments, new infections, new allergies, medication changes, intense rehab, the fallout of trauma. No conversation is finished, few are even started. I think of the weeks spent rubbing their hands and feet and wonder if in some strange way I smell like the hospital, like death and terror and paralysis, drowning slowly in the shrill beeping hell of ICU. There’s no words for this. Their mind is fractured and ravaged. I’m replaced. I hate them. I love them. I accept what I cannot change.

I cry every day for months. Everyone wants someone to blame. I find myself defending everyone. Poppy gets a cold that lasts weeks and Rose is forbidden by doctors to be near her because they are so vulnerable now to respiratory illness. The distance drives them insane, tears their heart apart. After 4 weeks of staying apart, Rose is hospitalised with pneumonia anyway, then has anaphylaxis to one of the antibiotics. No one’s body, it turns out, can be on these massive doses for this long without becoming sensitized. Rose’s heart and mind are stripped so raw the lightest touch burns, triggers pile up and overlap, flashbacks descend like lightning storms and the nightmares rise like black floodwaters full of dead things. They are tormented by the fear it would have been better if they’d died, and it’s a mind virus resistant to nebulous hopes of a different from planned but still bright future.

My friends and family hold onto me and I hold onto Poppy. I flip my life around as a single parent. Gradually my capacity returns; I can wash dishes, cook meals, be present, plan adventures and crafts, go hours without falling apart. Plug the holes in the boat, make new plans, test new adventures.

Hate the circumstances and don’t hang blame where there isn’t culpability.

Fury at the situation eases my self hate. I can breathe again. It’s not fair and it’s not my fault. Sometimes life is just hard.

Let go of everything I can’t have. My lover, my beloved growing old alongside me. The family, waking in bed together in the mornings, holding each other tight after each fright and each good news. Let it go. Face what’s in front of me. Rose fighting for their life and not knowing what it will even look like anymore. Poppy needing a childhood that’s safe and adventurous and connected. Hold onto all our values and ideals. I can’t be half Poppy’s world anymore. I can’t work in the background knowing Rose is there with her, filling up that wonderful tank that needs connection and attention and delight and fun. I can’t be half a parent. Step up. Show up, count my blessings, hold tight onto everything good and beautiful and precious. Fight like hell for it. I nearly missed out on this. Let go and hold on.

Rose swims and drowns. I am no longer the carer in the middle of their story. I watch from the sidelines, try to throw life savers. Grieve. Train my mind to stop going over every conversation, looking for the place it went wrong or what I could have done differently. Stay focused. If I drown too, so does Poppy. You can have an existential crisis or you can have a life. Choose wisely. Hold tight.

I don’t know what happens next. I’ve found I don’t really get used to the scares. I want to be home and nearby when things are bad even when I’m not welcome to visit. Old habits. When things get very black for Rose I struggle to sleep, to think clearly, to be grounded. A fog descends that makes daily life so hard to manage. The terror fades into the background but it never goes away. In some ways I’m still waiting for them to come back from a war. I have to keep finding my way into the new world, creating it every day. Building on new habits, creating the security, the consistency, the patterns and connections and community that buffer us from these storms.

We are all losing who Rose was, and they don’t have words for this. No one can come through these experiences unchanged, and right now change is their only constant. They are in flux. They are in torment. They are in love, in pain, in the middle of it all, bound up with death and life and hope and dreams and grief and loss. They are profoundly lost and struggling towards a new future they can’t envision. We may yet bury Rose this year, or Rose may emerge in some new form, to a new life. None of us yet know the ending of this story. Whatever the ending, I must live with it, and Poppy must live with it.

There’s grief and shock and sorrow. Rage, despair, pain.

And there’s acceptance. Grace. Love. We accept the things we cannot change. We let go of what we cannot have. We hold onto what’s precious and in front of us. Over, and over again. We face life with as much love, courage, compassion, and humour as possible. Let go. Hold on.

Rose is Home

Rose has made it out of the hospital! They are getting daily visits from nurses and doctors and have so many appointments back at the hospital next week we could just camp out in the carpark, but they are home. We are out of life and death and into recovery and adapting. There have been many tears. They are in severe pain. When it gets too bad their blood pressure goes up and their oxygen levels drop. They have a complex medication schedule with many conflicts that need close monitoring. The medications that are healing the lungs are risky for worsening the mrsa in the knee. The psych meds are risky with the antibiotics. They need crutches to walk, which the physio has suggested will be needed for the next two years. There’s a lot to adjust to.

We woke up yesterday morning before Poppy and held onto each other through a deep cry. That was really scary, and we have a lot of work ahead of us. Rose’s allergic reaction is so rare it has never been recorded in someone who is not over 65 and male. It will be written up so that other doctors are aware of that possibility, given how often it is fatal.

Shock and fatigue, dragging Poppy around to appointments and chemists and trying to gather everything we need to care for Rose and restore as much independence as possible. Depression punctuated with panic. Insomnia, irritation, grief. Vulnerability.

And every day, these precious moments we thought might not happen again. Poppy playing games with Rose and giggling madly. Shared dinner. Cuddles. I went and brought a bunch of craft things so we can sit together in the evenings. Rose has Lego kits, I’ve started a diamond painting with Poppy, and she has stickers and foil and a book of bugs. Mindless, mindful, soothing.

It’s really hard. We’re really lucky. Friends and family are helping keep us afloat with safe friendly company and connection. NDIS support will help take on more tasks that are too much for me, such as the driving to so many appointments. We snatch moments of hard won normality like lunch with friends, or a board game night. Breathe it in and find the tenderness and patience we need for each other, for recovery, for our new normal.

Recovery

Rose continues to improve, much more gradually than expected with fun mini breathing and pain crises that trigger a flurry of reassessments and new tests and visits from ICU. Back on the ward and into the chaos of constant plan changes; one morning they are suddenly told they are fasting again for the next knee surgery, then taken off fasting and told they don’t need one, rinse, wash, repeat. The surgery is simultaneously urgent, not urgent, and unnecessary. The rollercoaster of emotions runs the gamut from terror to profound relief, frustration, exhaustion, rage. New tests find no new horror, just very injured lungs taking a slow path to recovery.

Doctors loom in the doorway telling us nothing is wrong, something new is wrong, the lungs are permanently damaged, the lungs are healing well. Veins collapse, tests intrude, a machine positioned behind the right ear screams persistently. A stranger comes into the room looking for green containers. A disgruntled nurse dismisses breathing stress as panic, until someone more senior applies the machines that show it’s not. But the most devaluing ideas have the greatest hold so for hours afterwards, Rose insists it’s only panic and won’t apply oxygen. They’re told to never get pneumonia, as if getting pneumonia is a poor personal life choice or a moral capacity they have control over. The future is rosy. The future is bleak and full of chronic illness. The future is unknown. The doctor that was coming can’t be found. They are always around the corner but never quite here. You’re not allowed off the ward, off the bed. You must get up, must exercise the knee, mustn’t let more deconditioning occur. Panting, breathless, sleepless. There were donuts in the cafeteria, but no one else can find them. Life is freefall in limbo. Morphine eases the pain so sweetly it brings it’s own terror of addiction, something within fights the peace.

Stop crying, says a technician entirely without feeling, I can’t get clear images when you’re crying. Sobbing is no longer considered withdrawal of consent. I’m sorry today is hard, is there anything else we can do for you? asks the soliticous nurse standing carefully two feet away from the trauma zone of a body that is no longer covered by the dignity norms of regular life outside of a hospital. The only nurse on the ward to use Rose’s real name and pronouns.

The shampoo smells like hospital. The hand wash smells like blood. The moisturiser smells like pain. The deodorant smells like unwashed hair. The food smells like dying. The massage oils smell like shitting the bed.

The hours folds into days, tesselate into years. Life continues out of reach beyond the boundaries of the hospital walls, weather is a private joke shared among the guests. The mind becomes primal, some collapse into despair, others like Rose spin into caged animals desperate to fight or flee. Friends and loved ones reach out hands to soothe, but where we see safety Rose sees the covid patient parked next to them in the overcrowded corridor, the stressed and frightened nurse, the medication drip poisoning them.

We have all walked into a dark place, but not the same place. We don’t share the same views or yearn for the same paths. For me, hospital is becoming a normal part of life, we weave it in as best we can. Picnics, lego, Poppy, card games. We come and go and learn the paths and flows and what days the parking is easiest and which wards are most peaceful and start to know the staff by name, share updates in line at the cafe. It’s horrifying but banal compared with the morgue.

For Rose the hospital is punishment for failing health, they must earn their way out through a gauntlet of requirements: less oxygen, better bloods, less pain relief. They rush the process and trip. Life goes on without them. Someone feeds the cats. They bleed out of patience and gratitude. There’s no place to take terror or rage. Peace is unstitched by confusion, the stuffing comes out, floats free, dissolves. Within the quicksand of unknown outcomes, unstable condition, multiple teams, and constantly changing plans, they cannot help but struggle, try to find the surface where they have some kind of power and plans can be made. So here we are.

Rose is Recovering

Not bacterial pneumonia after all, a rare and severe allergic reaction that filled their lungs with pus and nearly killed them. They are still in ICU but their lungs are getting stronger every day. The darkness of losing them starts to ease back to a terrifying memory. Doctors argue about the best timing for the next surgery. We talk cautiously about a holiday. We pencil in the tomorrow’s plans and roll with the changes. Startle at every new symptom. Look at our tired family and friends through eyes full of gratitude.

Poppy has been buffered from a lot of the intensity of the last week, but she’s still aware of changes and loss. She had a meltdown yesterday and I shut myself down so I didn’t meltdown with her and could be patient and firm. Then found myself slipping into the horrific depression that’s been biting at me and my heart broke.

A few days ago my whole future, Poppy’s life, and all the memories of me and knowledge of me that only Rose has nearly fell into the dark and I’d have given anything to just have them survive. How the indescribable relief of their life can exist alongside such bleak emptiness I can’t fathom. It’s not the screaming blackness of grief, it’s a greylands of disconnection. It felt like something else fell out of my world instead. Poppy left trying to connect with an empty parent. Me trying to find a sense of self and hope in my own emptiness. Undo that shutdown and coax feeling back. Talk soothingly to myself. Try to make sense of the triggers. Sit near people I love and find a sense of connection. Pieces of myself like tiny lights in the dark, winking on and off in tiny constellations. Everything fragmented.

I want nothing more in the world than to bring Rose home and share a life, yet living that life is so confusing. I can sit in the hospital and read and rub feet, I am familiar with that role. Here in exactly the life I want so much for them. I have to work hard to anchor myself to the moment and not get lost. These are good people around me. A morning pushing Poppy on the swings is something to treasure. There’s a lightness of heart I don’t have, numbness layered over terror and rage. I feel unseen and I don’t know how to make myself visible or if that’s even a good idea. I feel heartbroken by life. I just want my people alive, I’ll deal either else we have to. This is a truth.

I want a good life for us, and I’m not sure what that is, or how to do it. Also a truth. I’ve worked so hard to get here, with a home, family and work, with a loving community, and yet. I’m so exhausted and so lost from myself. How can it be so hard to live the life I’m so desperate to protect? Is that autism or just exhaustion? How can I feel like this when the news is actually, incredibly, unfathomably good? I want to go back to yesterday when I was lit with energy, indescribable relief.

I eased myself back into existence, soothing the disconnection. Shutting down my feelings to parent has to be a temporary thing, but I seem to get stuck there. I keep reaching out. I find moments to cry.

I just want Rose home and to hold on and be held onto. Nothing makes sense in my head. I can’t do this on my own.

Rose is in ICU

Rose and I had been talking lately about me starting writing again. We talked about how their nickname Rose didn’t feel right since they came out as non binary and starting using they/ them pronouns earlier this year. We talked about my sense of unfinished business since Jay, and what I would need to do to feel like I could draw a line in the sand and start again. We talked about how I’m running a business now and sharing deeply personal things could have unintended effects on staff, clients and colleagues. And we discussed my love of writing and my sadness at losing the blog and feeling cut off from it.

This was not how I planned to start sharing again. I don’t have a new nickname for Rose. I don’t have resolution or answers. But I’m being asked how I am every day and I don’t have words for that I can say without screaming.

Dearest Rose is sedated and ventilated in ICU, battling MRSA ‘golden staf’ that has chronically infected their knee following a routine surgery, and since spread to their lungs in a virulent pneumonia. Four days ago they merely had a bad knee and a slight cough. It has moved extremely quickly and taken over both lungs.

I’m exhausted and distraught. I want to cry, scream, vomit, and violently attack something. I visit every day and help wash them, rub their hands and feet, read to them. Then I go out to my car and cry hysterically. Then I come home to Poppy and try to be her connected and safe person. My community are tired, 2020 has been unkind to many of us, but they are also rallying. Poppy has a small crew of people she feels safe with this time, which is buffering her. She tells me she misses Mama’s squeezy hugs and asks me when she herself will die. I feel so depleted. I was struggling with exhaustion and depression following all the other surgeries and stress this year already. It feels like my reserves are exhausted.

There’s so much noise around me. I’m still writing to Rose so they can catch up on messages when they wake. I’m so scared and so sad. Everyone wants to help and I can hardly speak. Rose’s hands and feet are chilled cold. Poppy paints herself and runs whooping with her friends under the peppercorn tree. So many people care. I go back to bed to nap. Don’t let this be my new normal, please. I have to find ways to keep breathing even when I can’t be near them. Guilt, fear, regret engulf me. Before they went under I told them it’s okay to be scared, but I want you to focus on the love. You are so loved. I’m trying to do the same. I’m so scared. There’s so much love here.

Brutal and beautiful

It’s been in many ways one of the most brutal weeks we’ve had as a family. Rose and I have both been slogging through medical settings in terrible pain, Poppy needs some specialist care, Tonks the cat has needed the vet, and currently neither Rose nor I can drive due to our injuries. 3 weeks ago the sky was clear blue and all was well and suddenly this, all unrelated.

Life is frankly a serious PITA at times. We are getting slugged by expensive medical costs and the need for private surgeons and physio (My elbow is a mess and Rose’s knee) so we’ve shelved plans to bring home a lovely therapy bearded dragon for Rose, and are booking in vital appointments and doing all the admin needed to get some money back through Medicare/ health insurance etc or possibly covered by one of the various low or no interest loans out there for folks like us.

ID live stage photograph of Rebeltheshow, at the Adelaide Fringe, with a musician hanging upside down on a swing, balancing on his head, while playing a ukelale.

And yet, things are so, so good. People are helping us in a host of ways. Work continues to be excellent and something I love. Poppy and I swung in the hammock this evening, watching the light through the leaves of our mulberry tree. My home is clean and the garden is tended and Tonks the cat will be okay.

Last night Rose had to go through an awful procedure where they sedated her and stopped her breathing to relax her limbs enough to allow her frozen knee joint to be manually unlocked. I said goodbye and sat in a waiting room alone at 4am, sobbing on the phone to a friend, waiting to find out the outcome.

I remember kissing her forehead, the flash of her brown eyes: so beautiful, a hint of green in the outer iris, hazelnut brown and bright as golden timber in the centers. The pain so severe and enduring after 7 unbearable hours that she was desperate and shrugged aside the risks: anything to make it stop. I promise I’ll fight to come back to you, she told me. Be at peace I said, trust them, I know you will, I trust you.

It’s been a truly horrible week and yet my heart is so light and singing, singing I can’t contain it all. I think of Adelaide Writers Week last year, Jackie French talking about riding in the back of the ambulance where her husband was suffering a heart attack, noticing the beauty of the world around them. Telling us that no matter how dark things get there’s always beauty and we must look for it and be open to it.

My world today sings. Everything is brighter and more subtle, more beautiful and tender and lovely. I am in love with the world simply because Rose is still in it.

Ink Painting: Mother and child

Late last year I began this work after struggling through a day with Poppy when I was suffering unbearable depression and anxiety. We went to the museum in town together and she had a wonderful time. I felt like I couldn’t breathe and that her momentum was pulling me along while I tried not to drown.

I adore using UV inks to explore the idea of things that are hidden from sight or knowledge. That there are things that are only known in certain settings or visible in certain lights. This mothers movements make little sense until you can see the water flowing around her. Her context is invisible to most.

ID: line drawing with black ink of a mother and child holding hands. The child is walking along a low wall, balancing on top with arms outstretched. The mother is floating along behind, clutching her throat and watching the child. UV reactive ink shows a flowing river about the mother that is invisible in regular light.

She loves me

When Rose packs lunch for me, she sends with a little container with my tomato slices, carefully salted and ready to go on my sandwich so it won’t get soggy. I’m a very, very lucky person. 💜

Image description a sandwich with the top slice removed, showing ham, cucumber, and tomato slices. In the background out of focus is a blue lunchbox with yogurt and a banana.

Parenting with chronic illness

Each gallbladder attack I have is taking longer to recover from. My fibromyalgia flares and I feel like I’m recovering from getting a good kicking. I recently learned that I’ve been cutting too much fat out of my diet to try and prevent extremely painful biliary colic episodes. The extra low fat diet left me with headaches, exhaustion, foggy brain, and chronic pain. Bumping my fats back up has been quite magic and I’m feeling much better. I’ve been scheduled for surgery to remove the gallbladder next month.

Image description: A young child on a park swing. There are trees, lawn, and bark chips. A small green bike is lying on the ground by the swing.

In the meantime I’m muddling along. I used to be so afraid of this place: sick and trying to parent. It is hard. It’s really hard. I’m so incredibly fortunate to have good people around me, that network I put effort into building has saved my life. It saves me when I can text a friend in distress instead of crying in front of Poppy. When there’s someone to pick Poppy up from the ER so I can be treated. When our daycare provider lets me arrive late while I try and coordinate a crisis. My world has flexibility, care, accommodations that ease the sharp edges of my limitations and soften the harshness of the things I’m dealing with.

This creates capacity I wouldn’t otherwise have. So rather than merely the nightmare stories I feared, mostly Poppy and I muddle through. Rose takes her so I can rest or nap. I walk her to the park so she can ride her bike. We snuggle under a blanket with a hot water bottle and watch a movie together. We do crafts or painting on the dining table. She plays in the back yard while I hang washing.

I have a collection of low energy/high pain ‘tough day’ activities like this I can enjoy with her. And I’m still working towards the lower daily effort/systems and routines/life on the easy setting changes I started making last year so that my home and work is efficient, sustainable, and frees up as much energy as possible for the things I’m passionate about – such as parenting, care giving, socialising, adventures, and creativity. With thought, planning, and support, it’s actually still wonderful to parent even in a rough health time. I’m incredibly fortunate and I love her to bits.

Love, by the water

Endometriosis, adenomyosis, PMDD, and PCOS is an extremely unhappy combination of troubles. For me it means very heavy, painful, unpredictable periods that often trigger severe depression and sometimes suicidal distress.

I’ve spent most of the last 2 days in bed with a heat pack. Today Rose took the lead and set up a beautiful family trip for us all. She made savory muffins and took us all down south to a beautiful beach for the afternoon. I went for a gentle walk in the surf, Poppy collected rocks and shells, and we all enjoyed watching a seal frolic in the light rain.

Image is of Poppy, aged 3, wearing fabric rainbow butterfly wings and running along a beach.

It was so joyful and relaxed and a safe space to just be. As the rain fell lightly into the shallows where I walked I wept. My heart has been full of doubt and confusion and heartbreak lately. Watching the light catch the water and the foam on the sand, I’m so grateful.

One of the things I fell in love about Rose was her ability to create these beautiful adventures: inexpensive, simple, and so connected to the moment and the environment. I’ve often yearned for these things but when I’m sick or distressed I struggle to arrange them. My initiative is paralyzed, so I yearn but cannot act. I recall many days when I lived in my unit by the beach, longing to go down to the water and unable to. I could never have made it to the beach today, but with her doing all the heavy lifting I could be swept along to something beautiful and nourishing. I fall in love all over again.

Podcast: Keeping Mum

I’m excited to share this project in which I played a small role.

This beautiful podcast sensitively explores the largely untold story of the experience of children of LGBTIQ parents. It’s a lovely interview of the now adult child of a lesbian mother who navigated raising her family in a conservative community. The marriage equality plebiscite in Australia last year often aired concerns about the effect on children of being raised by queer parents. While there’s excellent research that shows these families are just as safe and nurturing, it’s also helpful to hear personal experiences and accounts.

Produced by Suzanne Reece who conceived the idea, conducted the interviews, edited, and created the sound scape.

I provided a voice over for Suzanne’s poem, some of the background chatter, and the illustration.

First aired on Radio Adelaide, you can find ‘Keeping Mum’ here. Please feel welcome to share it.

Autumn

It’s late Autumn, cold and grey. The last sunshine is stunning, delicious and golden as warmed honey. Last night I snuggled down into my bed like a happy burrito. I’m creating daily at the moment, a flurry of painting, writing, sewing. Today I baked delicious chocolate chunk peanut butter cookies. I’m still buzzing from making it through my uni trimester despite so many setbacks. A wonderful win to soak up.

My beautiful mural is progressing, albeit unconventionally given the frequent rain. I’m lucky Rose is still a romantic and doesn’t mind ink on the bedsheets or unexpected murals in progress on the oven.

I recently found the notes I took at the beside of a sick friend following an awful psychosis. Back then we discussed an illustrated booklet to help people better understand how to support someone so vulnerable. We spoke about it again today given I’ve recently completed my first short ink illustrated booklet, and I think I’m ready to consider the next booklet project.

It’s evening. Poppy and I are at the park. She is a red smudge in her raincoat, dashing about the green in the fading light, blowing raspberries at me from the top of the playground. The sky turns from baby blue and peach to soft greys and yellow. Birds flit everywhere, looping from tree to tree and weaving a song all around us. The last dogs go home. Poppy falls and runs wailing to cry in my arms. When she quiets the birds have stopped and we can hear the wind sweeping in through the trees. Night gradually deepens and the trees wave slowly like underwater grasses. We find helmet and boots and belongings and cycle back home.

Parenting with Trauma

Having our whole family sick together is an exercise in the logistics of rationing and portioning a tiny amount of energy to extract the maximum benefit. If I take her for an hour late tonight, then you do the morning, I’ll get you a nap at noon then you take her to the park for two hours so I can work on my assignment… The shifting priorities of dishes, doctors, meals, laundry, and mental health. It’s considerably more exhausting than being sick without kids, largely because of the difficulty of getting enough sleep to properly recover.

Monday Poppy and I went into the city. Rose had important appointments and Poppy was full of restless toddler energy. We had an argument on the bus about her not biting me which concluded with her screaming while strapped into her pram and me not making eye contact with a bus load of strangers. She got her own back by refusing to fall asleep for her afternoon nap. Usually she’ll snuggle down in her ‘cave’ made by covering the pram with a cloth, and knock off. That day she leaned as far forwards as her pram seatbelt would let her to fight sleep. 4 times she gently drifted off anyway as I paced around Rundle Mall rocking and circling the buskers. Each time she’d slip sideways as sleep relaxed her, clonking her head on the frame of the pram and waking up with a howl. Gently tipping the pram up evoked rage rather than sleep, and the fifth time she started to fall asleep I stopped and tried to gently settle her back which cued 20 minutes of hysteria.

I thought she might fall asleep in the art gallery but unfortunately that was the end of the whole idea. She talked to the other patrons, wanted to know all about the art, and once we found the kid’s studio space spent a happy hour cutting a sheet of paper into very tiny pieces.

The studio was set up to invite self portraits, with mirrors and oil pastels. This was mine:

I was glad of the space, it’s the most at home I’ve felt in the gallery.

I’ve realized that PTSD has interrupted our usually very calm parenting approach. Kids this age can be intense, they have huge feelings, test boundaries, and have way more energy than seems sensible. Poppy is fearless, explorative, passionate, creative, and stubborn. Generally Rose and I navigate these traits patiently and with appreciation of their positive aspects. But when she hurts us deliberately we’ve both struggled and the conflict has been charged and difficult to resolve. We’ve been worried about what it means and stressed by our own responses. I in particular lose patience and get angry, but Poppy isn’t easily intimidated which leaves me in a bind where I either behave in more frightening ways until she’s cowed and takes me seriously, or I find another way of approaching this. It speaks to the heart of parenting approaches to obedience and discipline. Do children follow instructions because they are frightened of us, or of the consequences? Or because they are connected to us and trust us? Is it appropriate to scare your child? If so, when and how much? Are boundaries about anger or love? Is breaking the rules or pushing the boundaries about immaturity, defiance, conflicting needs, forgetfulness (it’s easy to over estimate the memory capacity of a small child), or something else?

I’ve been starting to do a bit more reading on parenting her age group and it occurred to me that Rose and I are generally excellent at not taking difficult behavior personally, setting boundaries with warmth, and redirecting troubling behaviors. So when Poppy was getting into constant trouble for climbing furniture in the house, she now has a climbing frame outside for her to monkey around on. But when she hurts us there’s no such framing. We see no positive aspect to such behavior, no legitimate need looking for expression. We talk instead about her being mean, we privately discuss her sensitivity to our stress, her restlessness, her trying to get our attention. We’re troubled by a normal child behavior and framing it as lack of empathy. It’s triggering, evoking memories of being hurt by others and we both move into threat responses. Rose tends to freeze and withdraw, I get angry.

It occurred to me recently we’re misframing the behavior due to our histories. Most children this age want to roughhouse. Wrestling and tumbling and play fighting is a normal developmental behavior. Engaged with care it’s a place for learning about how to hold back and not hurt each other, how to apologise and caretake when accidents happen, and it satisfies the touch hunger and intense energy of very young children. Learning how to wind down into calmness following rough play is a key part of regulating such excitable and energetic kids.

Last night when Poppy started to get rough with Rose who was crashed out on the couch with a migraine, I didn’t get charged. I chose to see her inappropriate behavior as a need for rough housing and set a boundary with patience rather than frustration. I told her Mamma was sick and could only have gentle play around her. When Poppy kept being rough I removed her to the bedroom not as punishment but as an appropriate location for rough play. I gently with her permission threw her onto the bed, threw a big stuffed lion at her and told her this was where the fierce and grouchy creatures play. She was thrilled. She ran growling at me to the edge of the bed, waited for me to put my hand in the centre of her chest, then braced herself for me to gently push her back, screaming with laughter.

Later that night with Rose asleep and me exhausted on the couch with Poppy, she started to rough play again and I forbade her from getting on the couch with me. For the first time she was easily redirected into quiet play and spend a calm hour making complicated meals with her toy food instead.

There’s no problem with her empathy, Poppy is an incredibly affectionate and loving child. She’s not unusually aggressive or showing signs of attachment damage or deprivation. In mislabeling her normal needs as something that disturbed us, we introduced a charge into our relationship that she gravitated towards. Kids do this without knowing why, they can sense it and it’s irresistible. It’s why they do mad things like grin at an adult who’s already at the end of their rope and angry with them. They are still getting a sense of their own power in the world and what they can and can’t do. Navigating our own trauma as parents is about recognizing blind spots like this, paying attention to threat responses needlessly activated, and prioritizing basic needs like sleep, connection, and companionship so we function as best we can. For me at the moment on bad days I’m dealing with chronic irritability and low grade suicidality. Sleep deprivation and feeling isolated turn my world black. Over and over in a thousand little ways we choose safety together, celebrate freedom and autonomy, look for loving ways to speak about the unspeakable things, and link into the world around us. Without our wider networks of friends, family, therapists, without kids rooms in art galleries, and foodbank, and doctors who see trauma survivors rather than welfare bludgers, we couldn’t do this. But together there is so much strength, sufficient grace. Enough to let us all grow.

Using language to support parent infant bonding

Language is so powerful. When Poppy was born we found many people would frame our experiences or her behaviour in ways that were not helpful for us. It’s amazing how many of our common phrases ascribe bad intentions to the child. It may seem like nit picking to fuss over a word, but words build the story that impacts how we understand each other. They create the filter through which we interpret each others intentions.

I first learned about attribution theory in uni, studying psychology, and a lot of things clicked in my mind about people I’d known. Most anyone when depressed or overwhelmed sees the world and other people through a filter that makes the innocuous seem hostile and the mildly difficult downright sinister. Some of us are more prone to this more of the time, living in a world where grey runs to black. How we feel can strongly change the way we interpret others and the world around us.

Many of the stories created by common phrases used about children would pit Poppy against us, as if she was indifferent or even cruel. People would say things like she was “being a jerk” if she wouldn’t stop crying, was “too smart for her own good” if she climbed something and fell off, “had us wrapped around her little finger” if we went to comfort her after she fell over.

On one level this is a way to be light-hearted about the stress of parenting, laugh it off, and validate how awful and exhausting it can be! But for some, in the context of stress and sleep deprivation, this can also take the relationship between parent and child into dark and risky places.

It can be difficult to understand just how painful things can get if you haven’t been there. In the early months of Poppy’s life, I was often sick, very sleep deprived, and feeling at the end of my tether. I’ve noticed that a kind of flip in thinking can happen when things are really bad. If you feel stretched past capacity enough, at some point it feels like it’s not possible for everyone to survive. Survival instinct and maternal instinct start to contradict each other. The maternal (or parental) impulse to protect and nurture is powerful and we tend to see it as the norm. But it’s not always the way, and when threat levels are high and bonding is distorted it may diminish or become secondary. The impulse to protect the child may dissipate next to the sense that there’s simply not enough resources for everyone.

Things can get really desperate if the child’s behaviour is framed as a threat in some way to your own survival. The shift in thinking from ‘we are all in this together, having a tough time’ to ‘they are sucking me dry’ is a risky one both for the relationship and the child.

This interesting article, the neuroscience of calming baby explores what’s going on behind a common phenomenon – babies are calmer when carried and held but will often become distressed when put down. It talks briefly about how important it is to understand that this is an inbuilt mammalian response, to “save parents from misreading the restart of crying as the intention of the infant to control the parents”. Soberingly, this is important because “unsoothable crying is a major risk factor for child abuse”. This is not in any way to blame a child for being harmed, or to excuse harm done to children. It is to examine the context in which otherwise devoted, well intentioned parents can find themselves struggling with furious impulses or not coping.

Ascribing bad intentions to a baby starts to activate a sense of threat, that the child is wilfully harming the parent, deliberately denying them basic needs of food, sleep, and relief from distress. When bonding is good and parent needs are getting met, these things don’t matter so much. But in harder times they can contribute to a sense of being tortured by the child rather than by the circumstances. It’s desperately important to see a child’s distress as distress rather than an attempt to control, manipulate, or do harm. Language is part of how we do this, helping to interpret and contextualise so we don’t distort what we’re experiencing.

It’s also critical not to set up impossible expectations such as “when you cry I will make it better for you” with a child. Overburdened by this sense of responsibility, parents are at risk of feeling intense distress in the form of failure, agitation, and frustration if confronted by distress they cannot sooothe or silence.

Rose and I translated a lot of common sayings when we encountered them. Someone would say to us things like:

  • “She’s fighting sleep” and we would agree but shift the intention- “yes, she’s struggling to sleep today”
  • “She’s not a very good baby” becomes “she’s having a hard time settling at the moment”
  • “She’s got you wrapped around her little finger” becomes “she sure is a little cuddle-bug”

This was incredibly helpful for me in a few instances where I was struggling. In early weeks I was prodromal (warning signs of psychosis) partly due to severe sleep deprivation. I would get Poppy confused with Tamlorn, the little one I miscarried. Rose and I would tag team Poppy all night to give each other some sleep. There have been times I’ve handed Poppy over in sobbing distress and Rose has taken her out for a morning drive because my nerves are shredded by her crying and my nipples are mangled from her biting and I’m losing it.

It makes a difference to understand that Poppy is behaving as she is supposed to, not to harm me. Human babies often want to be held all the time and use crying to signal fear, pain, hunger and every need they have. It’s also a biological norm for infant crying to send us round the twist, and being able to see our own limits coming up without hating ourselves for them is valuable. Infant needs can be more than a parent can meet, or impossible to understand at times. Nurtured infants need nurtured parents and few of have invested in those kinds of communities before bringing a baby into the world.

Parent needs are deeply important to meet in order to buffer that sense of threat and reduce the fight/flight response being activated in distress. Staying out of crisis mode is partly achieved by treating adult needs as real and significant, and using language wisely to tell the most helpful story about the situation.

So we found it helpful to say ‘squeaking’ instead of ‘screaming’ for example. “Our little person is squeaking again” sounded less dramatic and helped us keep perspective. We talked about “witching hour” and planned around the time every evening that Poppy would be overwhelmed and inconsolable. We used baby wearing to manage her desire to be close in a way that reduced our fatigue and back pain, learned how to rest her face on our shoulder so her screaming didn’t go right into our ear, and use as a mantra “I’m here with you, you’re not alone” in place of wanting to fix it when nothing was working.

In our case, ‘colic’ was managed by reducing stimulation. The lights went off every night at 6pm, Poppy had a warm bath as soon as she started becoming distressed, and we didn’t go out in the evening for many months until she passed through the phase.

Language is a big part of what helped us navigate these huge challenges well. The risk of psychosis in the early days, serious difficulties with breastfeeding, and a baby with undiagnosed functional lactose overload and colic caused by sensory overwhelm. Combined with 2 deaths in the family and a range of illnesses for Rose and I, it was not an easy start. We were and are ecstatic to have Poppy, she is an absolutely beautiful, loving, curious, adventurous child. Tending to the stories we told and the language we used helped us to bond together during those difficult times.

Love amidst pain

At times when I’ve been very broke, I’ve felt that a troubling and difficult to name challenge that has been not the obvious stresses – affording bills and medical care and food, but a subtle one. Judged according to choices it’s assumed I’ve made, my life, my clothes, my presentation fits me to a standard. If there’s only one pair of jeans in the op shop that fit me, their cut and colour says little about me except my lack of choices. When I’m with others who’s choices are also constrained, this is understood, and we envy each other when personal taste isn’t inhibited by limitations. It’s a joy when we can forge something close to our sense of self from what we have.

Today I have been resting. My mind is burned out trying to understand some things that are extraordinarily painful to me. I have read and watched movies and curled up on the couch under a blanket. The weather is glorious, late summer and soft sunshine. I am recovering from a horrible head cold that has made my whole body ache. And I am thinking about my life not in an abstract sense as if I could have done anything, but from within the constraints I have faced. The long and terrible illnesses, the homelessness, the loneliness, the terrible suffering and self loathing I am still recovering from, growing up queer and unsafe. I think about the cards I was given and how I have played them and I am at peace. I have an incredibly beautiful life. I adore my family. I have navigated such heart rending and terrifying challenges to be here and to love the way I do from a heart so starved and shattered. It is so far in many ways from what I wanted or hoped for. But it so glorious given how lost I could have become. Queer and Christian can be a death sentence, and when I return to my old home at times, I can see myself on the floor of the bathroom like a ghost. I am curled around myself screaming silently and begging god to undo what I am. I have faced the absolute terror of hell and exile to stand here today. I have faced suicide and self harm. I have faced a loneliness so deep and profound that it felt like it was erasing me from the inside out. I have navigated multiplicity and psychosis, caring and needing care, the loss of friends, the heartbreak of not finding my place in employment.

I would not have chosen this path. I would never have chosen homelessness, or chronic pain, or my string of failed attempts to haul my life back onto the track I was aiming for. I would not now choose our vulnerablity, our financial insecurity, our public housing. I aimed very high and where I’ve landed so far, it turns out, is incredible.

I adore my daughters with all my heart, and the joy in parenting them surpasses anything else in my life. My beloved Rose and I are restored to each other after the terrible strain of last year. We are learning that knowing each other for 6 years does not mean we know each other. That love is in asking the questions and listening closely to the answers. The hand reached across the gulf of miscommunication and expectations. There’s so much love here.

Yesterday I went to a wonderful talk by local artist/illustrators about how they navigated their work while raising young children. It was wonderful and I learned so much. I also realised that their process was only fitted around children, while I was trying to build mine around illness and disability and many other things. It has not been easy and yet I am finding a small slow path.

Yesterday I went to the funeral of someone I had not known very well, the husband of a dear late friend. I was not sure I would be able to go. Death is not something I am reconciled to since I had my terrible breakdown. I felt angry and humiliated by my vulnerability to it. Rose eased me into finding the thorn in my paw. I was terrified of my secret, nagging judgement that his life had been wasted. I recalled heartbreaking conversations with him about his lack of the spark of joy, his envy of my passion. He too, faced many challenges in his life. Only when I found this fear could I see that my block was little to do with him, but my own secret terror that in some way I couldn’t even find words for, my life has added up to nothing.

So I went to the funeral. They read a poem by my late friend. It hurt so badly it felt like I was dying for a time. My heart broke for his friends and family. My heart broke for my friend, and how hard friends can be to come by. How irreplaceable each of us are in the web of our lives. I thought of the millions of people in the world and how easy it is to be lonely. How hard it can be to listen as deeply and carefully as Rose and I are learning again to listen to each other. How life is neither all triumph nor all loss. I listened to the heartfelt eulogies by his friends and saw both his pain and his life in a softer and more loving light. I thought about my friends. I thought about how I would be remembered if I died today, the way I would not want my sorrow or my struggles to be the focus, but my love and the people and things I have loved and tried to learn how to love well.

I went to a therapy appointment yesterday to open in a safe place a big painful box about family and history and abuse and relationships. I cried so hard I couldn’t breathe or stay seated on the couch. I couldn’t stop. So much love and so much pain. Agonising dilemmas that are sunk deeply into my skin like razor wire. No easy answers or lights on my path.

When I left I splashed cold water on my face and hair and wrists. I took a cold drink in a small paper cup and I staggered carefully to my car. I sat with my journal in my lap and no words until the urge to vomit passed. I drove home carefully into the sun, taking the route with the most shade cast by trees, and crept into my home to hold my little girl and a hot water bottle for the rest of the evening.

Today I look at what I have built, what I have made of my life with what I’ve given, or found, or forged, and I am content. It is humble but no secrets rot beneath the floor. It is glorious. I am limping and dancing, both. There are many beautiful and wounded people I have built relationships with, of one kind or another, tended these like gardens that need work and effort and understanding. Learning how to listen, how to speak, and how to endure. Gratitude for those who came before me and made my world possible, those who changed my world so that queer people were not vile, those with disabilities were not repulsive, trauma was not a weakness of character, and that those who were sick or poor should be given a wage to allow them shelter and food. I remember their sacrifices and their work and I am thankful. I remember them when I choose to make sacrifices and to work towards a better and kinder world for my children and their children. There is so much love here.

Painting: Silver birch tree spirit

Poppy and I spent the day together at one of our favourite parks recently. It’s a chance for me to not multitask and to be focused and present in a way I don’t often find myself doing. It was hot and dry and I found it took several hours before I adjusted to that and felt comfortable. The same for not working or cleaning or doing something on my phone, there’s always a restless period where it’s not comfortable or easy, until something adjusts and stills. Poppy and I bounce off each other and have fun in between little person big feelings. There’s often a time when we start to click together like fish swimming along side each other in a school. An attunement occurs that’s wordless and smoother. We don’t get in each other’s way so much, it’s more fluid and trusting. I love it.

We played on the playground and swings and explored the creek. Then Poppy made some art.

She was slept afterwards so we walked around until she fell asleep in the pram. Then I made some art in the shade of a huge gum tree, while she slept peacefully in the cool breeze beside me.

I wasn’t expecting to paint anything significant. I’ve just set up my travel kit with new watercolours and worked out a formula for teal, my favourite colour of ink. I was entirely focused on connecting with Poppy, not looking to fit anything else into the day.

Yet somehow, this beautiful heartbroken women emerged. It’s about the fifth time I’ve tried to paint her. She emerged without planning, starting from her open, distraught mouth and spreading into snow and trees. Painting intuitively like this is a sacred part of my arts practice.

Her hair began to resemble the tree branches and tangle around the babies and her arms. At the end I suddenly realised she was a tree spirit, which has never been part of any painting I’ve made of her. But it fits perfectly.