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.

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.

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.

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.

Ink Painting: We fall into the stars

A3 size. Ink on Arches paper.

A little while ago, Rose took Poppy and I camping, back to Rapid Bay. The place we used to go when dating. The place I went alone to mourn Tamlorn the Mother’s Day after the miscarriage. The place I fell off the planet into the void when running from the ‘real world’, but sent alone under the stars, in exile.

Together we watched the stars, a million million of them, brighter than I’ve ever seen. Satellite and stars falling and the milky way a mist across the sky. In the bay, dolphins swam with their young. Poppy asleep on my lap, my eyes wet with tears. I didn’t know if there would more nights like this for us. Somehow here we are, holding hands under the stars.

It is the work of our lives to find some way to stay alive, to still feel alive.

In Rose’s arms there, I felt so alive, it was like breathing stars that fluttered in my chest. We sat up in chairs opposite each other, held hands and looked up. It felt like the world tilted and we were looking down, into an ocean of lights. We held onto our chairs and each other and kept looking, hearts cracked open in wonder. All that starlight poured in. Love grows stronger under moonlight, feeds on poems.

We sit at the edge of the world and hold hands. Our child sleeps. The wind is warm and soft. We look up. We fall into stars. Love binds us to the world and each other. We do not fall.

Still kisses with saliva

You know it’s a good weekend when you wake up on an airbed on the floor of your mates place.

Rose was back in the ER last night having brain scans to rule out scary possible causes for severe headaches and really high blood pressure. I wound up driving all over the countryside and took her back up to the party late in the evening then decided to stay put. Her scans were clear, thankfully. Something’s going on but it’s for the local doc to sort out.

Apart from the health scare it was a great day. I even made it to the studio, bought some new paints, and started a new art work. Had some folks switch out who haven’t been around in ages. Felt liberating.

Rose and I celebrated 6 years together this week. We went out for ice cream together and have another camping trip planned. It feels like we reached rock bottom recently and are coming out the other side. Falling back in love. Making a life again, not just surviving and holding on. After the long downwards slide, engines on fire and screaming, it’s exhilerating. Still here. We’ll make it work.

Posted this on Facebook: Happy 6 years together, darling. What an adventure! You are the most amazing person, so kind, devoted and loving. You have such depth and complexity, so many contradictions and unexpected qualities. You give me great courage! Your patient and enduring love make you the most attentive and wonderful parent. Your honesty and bravery inspire me. Your dreams for our future make my heart happy. The humble way you learn and change your mind and explore life keep you open to new horizons and possibilities. You are beautiful and strong. I’m proud to be with you. I love you.

Waking up to find it’s all not as bad as it seemed. Counting the cost and tallying the things we still have. It’s enough. There’s enough here for a good life. There’s good earth here to grow in. Good memories to build on.

The household is still sleeping. Poppy is pressed into my back, warm and soft. The sunlight after the night’s storm is chill and white. My bones are full of happy conversations around the fire with friends, and chiming softly. It’s damn cold. But yesterday we switched and stretched and remembered the real world isn’t the only one out there. Stepped sideways into other places. Supped, cracked bones, sucked marrow from life. Ink on fingers, poems slyly in mind like sleeping snakes. She kisses me and I can tell she means it. I sit under the tree in the backyard and the world turns over in its sleep, I slip past and out some other door where my chest is a seashell holding the roar of the ocean. We drive in the night, Bowie, NIN, VNV, Numan singing of darkness. Into the company of people and we are not afraid.

Rose is back

Rose is home but not home. She was discharged from the psych facility on Monday. We are doing something that seems strange to most, I’ve asked her to keep spending nights apart. Not because we are breaking up or she’s awful to be around, but because I am so burned out I am on the edge of my capacity to cope. The last time she had a breakdown, so did I. This time I have kids and I desperately need to keep my feet under me. I have had many warning signs I’m on the edge, difficulty making myself get out of bed, or force myself to drive home, lots of crying, episodes of screaming (when alone), intrusive thoughts, intense anxiety and irritability, insomnia. I love her to bits and I’m very empathic. I can’t go offline when she’s with me, I’m so tuned in to her distress I pick up on it and feel it all myself. When she can’t sleep, I can’t sleep. I’m always on duty. I’m also chronically triggered. My history involves a lot of caring, and some very painful memories are very close to the surface at the moment. Helplessness in the face of suicide attempts, profound loneliness, fear, horror, torment. At times I feel like I’m trapped in a cage that’s been dragged underwater, and I’m drowning. Love is the cage, and madness, or trauma, is the water.

Nights alone have been a powerful restorative. I have an evening ritual. I clean and organise and cuddle Poppy and feel at peace and connected. The next day I can meet with my whole heart, however good or bad it may be. I’m not scraped raw and quivering with pain. This was my greatest regret in a previous relationship, that I equated the relationship to living together, and thought leaving one ment having to leave the other. I wish I had left the house but used the time to work on the relationship. Without living with their demons, feeling so unsafe and traumatised, I might have had more success recapturing what we’d lost. I intend to learn from that mistake.

Rose and I did this for a long time during our dating too, we lived 10 houses apart on the same street. That blend of together and apart suited us well and we flourished. Two partners with PTSD is an unusual challenge and needs a very specific approach. We are currently hunting for a room she can rent close by to replicate that time in our lives. Part of my plan to get as much of my life back on the easy settings as possible. We are not sure right now what the future looks like or how long we will do this. We spend time together every day, as a couple and a family. We will keep moving forward day by day, getting back into routines.

There are many hurdles yet before us. Welfare is one, they refuse to offer any rent support to Rose unless we formally, legally break up – absolutely the last thing we wish to do. Community mental health services are another, severely lacking in a sense of responsibility, compassion, or even basic customer service. It’s been a tough week but it’s also been so good to see Rose out in the free air again. Even in such a short time, the weight of institutionalisation was so evident. Out in the world there’s something more adult about her, more dark and wild and free and grounded. I fall in love all over again. Her beautiful eyes, soft hands, kind heart. She’s been so lost at times but she finds her way home. Darkness tears gulfs between us. Love bridges them. She is so precious and I’m lucky to have her.

Crisis

My dearest Rose has had a breakdown, we are both exhausted and limping. She has been in a psych facility for over a week now. We were trying to manage the crisis at home while she crashed, until her distress became so intense she could not stop vomiting. 5 hours, 18 vomits later, some shots of anti-emetics and a lot of tranquillisers in the local ED and finally she could rest a little.

Our poor little family is shell shocked and run down. Our tribe has rallied and surrounded us with so much love and support. We have both doubted everything hard. Our case worker tells me simply – you can be the strongest, most resilient people ever, sometimes things just go wrong.

She is working so hard to understand how her world has collapsed, how to find her way back. Is she talking responsibility, a social worker asks me. I think of her desperately colouring in at 3am when the nightmares are so bad she can’t stop crying. Crawling into the shower clothed to find some kind of peace under the thundering water. They gave her a rubber band in the unit, she snapped it until her wrists bruised. Yes, I say, she is very responsible. She is overwhelmed. I am overwhelmed. Sometimes it’s more than we can bear.

I’m lying in bed so deeply sad it feels hard to breathe. I type messages to people and don’t send them. I look at blank status updates and turn away without words. There is an ice cold patch between my shoulder blades, radiating a chill through my back, into my chest, like a spike into my heart. Aching with cold.

We talk ourselves into hope. We talk ourselves into despair. Over and over. Holding tight, and on the edge of everything we have loved and built dissembling. We are on fire. We are broken and spilling into the night.

Rose has messaged me from the unit tonight. She’s vomiting again, chronically, and her blood pressure has spiked. They are taking her back to the ED. I feel broken. They plan to send her home in a week. I cannot fathom caring her, as well as my children, and myself. I don’t know how to keep us all safe. She is the mother of my child. The heart of our world. I love her so dearly. I am so tired. So scared, and so sad.

Holding ghosts

This is always a hard week for Rose, with anniversaries of miscarriages and other losses. In the past she’s grieved alone, with no grave to mourn by and no recognition of her loss. So today I took her to a cemetery.

I had permission from a friend – the mother of a lovely girl who died far too young, to sit under her memorial tree and remember Rose’s little ones and our Tamlorn. We sat in the shade her beautiful tree with Tam’s ashes, shared a birthday cake for the 7 children not with us, and cried.

It hurt. It was hard to do, many kinds of pain are shrouded in shame and a trick of the heart that says don’t look, don’t go, don’t feel it, it’s too big and dark and will destroy you.

It hurt but it was not unbearable darkness.

It eased the loneliness of loss but it was not epiphany or resolution.

It did not cure, but it had meaning.

We left roses beneath the tree. I made an ink painting to remember the day. Then we left to pick up Poppy from daycare, and held her tight, all the rest of the night.

Fresh start

I cut all my hair today and I’m feeling much lighter. It’s been a hell of a week. Poppy got sick out of nowhere. I woke at 3am to find her spiking a huge fever and having convulsions. One ambulance trip and a day in hospital later the conclusion was it’s an unknown virus but nothing dangerous and we all went home. It’s taken a number of days for her to kick and in the meantime, Rose and I have come down too. It’s such a non specific thing (headache, stiffness, aches, tiredness) it’s been hard to tell if we’re sick, sleep deprived, or depressed.

Hospital involved taking Poppy’s temperature, checking her pulse and oxygen saturation, and wearing an ID bracelet, all of which she found extremely upsetting. So we brought home her used pulse ox set and ID bracelet to add to her toys for play, and Rose brought a new under arm thermometer that lights up green for normal temp, orange for elevated and red for very high. Since then we’ve been playing ‘What colour are you?’ with Poppy, Mummy, Mama, and sister, and Poppy is now quite happy to have her temperature taken and check out what colour she is. Hopefully if she needs a stay in hospital again these things won’t be so traumatic. Rose is the mastermind behind this, she’s a genius.

In the meantime, I’m resting as best I can and nibbling away at work, and hope to be back on my feet for real and less sore very soon.

Poppy is 18 months and Rose and I are dating again

At first it seems there’s no visible difference from the complete shift in your world from focusing on each other to wrapping yourselves around children. You check in, keep a wary eye out for signs of trouble but everything mostly feels smooth and unchanged. The lack of sleep, lack of adult time, debriefing space, opportunities to not be adult all add up but none of it seems to be costing closeness or connection. The relationship is getting almost no attention yet is still growing just fine, like an old rose bush in the yard.

Then somewhere you find yourselves without warning on the edge of a precipice, watching each other and seeing the pain in the eyes and the numbness in the heart, wondering which of you will let it go first and how many millions of pieces everything will break into when it smashes on the rocks below.

The world wears through the skin into bone and through bone into void. The foundations are strong but they cannot hold forever.

2 years now, Star has been with us, and Poppy is now 18 months old. We are still asking the questions, gently, what does love look like here? What do we each need to thrive, or when that’s out of reach, at least survive?

Rose and I have found ourselves at the raw edges, feeling worn. Parenting is an intense commitment built upon the strength of a relationship we’ve barely tended. So we’ve started up family counseling again, and set aside some hours each week, alone. Date lunch. Once a week soul time. We go someplace and talk, about us, our lives, our dreams, our hearts. Like the old days. We unpick and re-weave ourselves like old shawls. For a couple of hours we are the only people in the world. We sneak out of life and hold hands and talk about love.

Something that had withered, grows new shoots. Soaks up the sun and rain and hearts cracked open. Feels alive again.

How easily we lose one another, side by side in the same bed, working in the same kitchen. Yet how neatly the rift is mended, like a darned sock, the jagged edges drawn back together, the cold pushed at bay.

Darkness is all around us and our souls do not cry loudly as they fade. They speak the quiet language of loss, the ‘failure to thrive’ of the adult who so wants to thrive.

We run far out beyond the horizon, holding hands. And run home, hearts aching for our children, longing to hold them. Always walking both worlds, like selkies. Slipping one skin to show another, knitting our lives from the days and nights, the poems and the tears that lay in our hands, like pearls.

Rose is recovering

The news is good for Rose. Our doctor considers that she has merely been unlucky lately with multiple illnesses and infections, rather than suffering from an underlying problem we haven’t found yet. Irritatingly there was no discharge summary or even a record that she had been in the ER, much less any test results. But she is recovering and rebuilding her strength. 

I am thrilled. I was so worried I nearly threw up in the waiting room before we saw her doctor. She is deeply precious to me, utterly irreplaceable and unique. 

I had a wonderful day in the studio this afternoon, just playing. Then I bought Rose some little gifts and flowers from the city and came home on the bus feeling like I could fly. We recently celebrated 5 years together. She is my home, my family, my safe place. I love her to bits.


My lovely oil painting is progressing and I have begun to work on the colour layer. Some tones such as the pink in her cheeks and yellow in the dress will be added in glazes over the paint. I’ve been learning so much, it’s such a novelty to have instruction, as I’m mostly self taught in my preferred mediums. This class is the first oil painting tution I’ve had and it’s been very enjoyable. Mixing all those skin tones! There’s a great many hours left in this one yet. 

Gastro for everyone

It’s been a rough couple of days after a really wonderful week. We’ve all caught a particularly nasty strain of gastro. Poppy came down first and has recovered, Rose and I have been hit hard. Star has just come down today. It’s played havoc with Rose’s other health challenges. I managed to get her through the echocardiogram she’s been waiting for several months to have. Then all hell broke loose that night. It got me while I was walking Poppy to the shops to buy groceries, I struggled home. The world’s most useless home doctor visited for Rose who had been violently ill for hours, took no vitals and gave her an anti nausea med to pointlessly vomit up. With Star in the kitchen and me on the couch vomiting into a bag with Poppy on my lap, Rose got up and passed out, crashing to the floor. It was terrifying. I called my Mum and an ambulance. We were all really stressed, and Star wasn’t sick yet so I couldn’t even give her a hug.

The sadness of missing out on the marriage equality rally in town with so many friends and beautiful families.

Rose is still in hospital but slowly on the mend. It looks like she fractured her kneecap in the fall, but although she smacked her head she’s got away with a lump and a nasty headache. It’s taken a long time to rehydrate her and weird and worrying test results which are slowly coming right. It’s horrible not being well enough to go be with her.

So I’ve stayed home in an angry agitated state of helplessness, sickness and anxiety. Star looked after Poppy all yesterday, thankfully. I dealt with the nights, a cycle of vomiting, crying, nursing, and napping. I put out a call for help but the few kind souls who offered I told to keep away, they had important reasons not to be exposed. Families are so vulnerable in times like this, we have so few formal supports. If I was employed in child care no one sane would ever put a child in my care but there I am putting out the rubbish and vomiting into the driveway, and sorting out my meds and water bottle while a one year old screams and  hangs onto my trousers. We are very lucky to have such good informal supports. My Mum came and cleaned for us, Rose’s Mum did some shopping and took Poppy to hospital to visit her. 

Hopefully we will all be together again and recovered very soon, because that has been a tough couple of days and I could sure use a hug!

5 years with Rose

Yesterday was our anniversary. ❤ I’m so proud of us. It’s strange and a bit painful to be celebrating our relationship at the same time that the marriage equality plebiscite (a postal vote about same sex marriage) is going ahead here. It’s stressful and consuming a lot of emotional resources. We hate it. 

But here we are, 5 years in love. My tiny unit is stuffed to the seams. My once solitary and lonely life is unrecognisable. Through thick and thin, Rose and I have woven something beautiful; dark, bright, strong, and precious. We’ve kept believing in each other, in ourselves, and in our family. Not all the time, sometimes only a little bit, small scraps of hope in dark and painful times. But enough. In the good times we are so strong, so complimentary in our skills, so similar in our values. In the bad times we are strong enough to hold on. Not perfect but not trying to be. We’ve both escaped enough utopias to know that there magic in muddling through. 

Rose and I have now been together, unbroken, for longer than any other family she’s ever been part of. The sheer amount of work she does to have made that possible is hard for people to comprehend. All the times she doesn’t run when that voice deep inside tells her to go. All the ways she’s learned to share and explain and connect so she can function the way she needs to without tearing at our relationship. She’s amazing. 

We are struggling to balance our family, to nurture ourselves and each other along with our children. They are such a joy, so adored and long awaited and we pour ourselves out. There’s little left for each other at times, guilt and exhaustion. But here we are, celebrating us as Spring drips with honey blossoms and rain. We keep holding on, we keep learning. 

Rose sees so much of me, sees me so real. She believes in me, so unwaveringly, and walks with me whatever the path. Her kindness is her shining heart. She’s my safe place to come home to, somewhere where they speak my language and dream my dreams. 

I’ve been incredibly lucky in so many ways. Every year with her is a blessing. She’s absolutely unique and I love living with her, sharing all that we share, waking beside her every morning. She is my beloved and I am hers. 

Nursing Rose

My darling Rose is sick. Tonight we’re tucked up on the couch with cauliflower and bacon soup, watching Harry Potter. 

That’s a considerable improvement on last night where she was hanging out in the ER and I was shuttling between her and the girls at home. Fortunately nothing is seriously wrong, and with a few weeks rest she should be feeling a lot better. She went in to have pain in her chest and leg investigated in case they were a heart attack or a blood clot. The chest pain turned out to be inflammation in the lining of the heart, and the leg they believe is a ruptured cyst. Both painful but not dangerous. She’s feeling pretty miserable and has also come down with tonsillitis, poor love. It’s really not been her year, she’s had so many health challenges and difficult circumstances to navigate. She’s still an incredibly devoted parent but is needing some extra down time and support. Fortunately work are understanding so we’ve both taken a few days off. Poppy missed us both badly and has been really unsettled today and struggled to sleep orv play by herself. So we’ve cancelled day care tomorrow to give her some extra snuggles and hopefully with some love and rest we’ll all be feeling a lot brighter very soon. 

My lovely Rose

I came home from work the other day to find Rose sick and tucked up on the couch under a blanket. I washed some dishes and made dinner, which is always a bit tough when I’ve been away all day because Poppy is so sad that I’m home but still trying to do other things. I nursed and cuddled first, and played and sang to her while cooking but after awhile it wasn’t enough and she was crying holding onto my leg. Rose got up and tickle-chased her around the house. My home rings with baby giggles and whoops of delight and I feel like my heart is going to burst.

It’s been one hell of an adjustment, this year. Brilliant, but huge changes and new skills needed. I had a great conversation with my shrink my other day who helped me get out of a hyper-critical mindset I’ve been stuck in and my heart is so much lighter. 

Rose and I have been hurting, feeling like however much we love each other, our relationship was withering. A desert was opening up between us. We moved between talking about love and marriage and having more children, and wondering if we might break up and fall apart, bewildered by how our relationship has changed so much in such a short time. And under everything else has been a kind of fury in me, killing every living thing around me. Every day a few more trees dead and the desert a little bigger. 

Fear will do that to do you. I want to be good enough. I want to keep my job. I want to get my family out of poverty and cramped public housing. I want to raise my girls well. When I’m terrified I’m not good enough, when I feel like I’m straining under a load too heavy to carry, when I’m giving everything and it’s still not right then terror has teeth in my soul and a kind of violent frenzy grips me. I try to succeed through criticism, motivate myself through brutality. Every imperfection is magnified and my campaign of self improvement is bloody. Every error I make – or Rose makes – must be corrected immediately or we will live like this for the rest of our lives. There’s no time to learn, no space for growing and talking over and trying again. Gone is the beautiful ‘muddling’ of our pre-parenting days. The stakes are high and perfection is the baseline of acceptable. 

We tear apart. Even when I bite down all the harsh words and speak none of them, my rage boils just beneath my skin and we can both feel it. I burn like a nuclear bomb and the fallout is soft, silent, deadly, and widespread. 

We talk bewildered. Why? What’s happened? I used to be kind, now I’m scary. The word abusive is brought into view and something in me drowns in tears and despair. It’s true. How did this happen? Why am I like this? How do I stop? What’s happened to me, to us? I used to be her safe place. I hate myself. I cut deep into my own heart, looking for the cancer. Trying to be better. Imsorryimsorryimsorryilltrytobebetter. Self hate and rage and terror add intensity. She has nightmares of me. The desert just keeps growing.

Stop and look at what you’ve achieved, says the shrink. Tell me about your skills and success and accomplishments. Vividly. Feel them, in your heart, in your body. Embody them. Bring them from head knowledge into the rest of you. Every time the criticism, anxiety, or despair comes. Remember your successes. Be kind to yourself and to her. Go back to your healing roots. Get away from delusional self improvement, terror of failure, and brutal perfectionism. 

I come home and we sigh with relief, hold each other tight. The war moves away, out of my skin and bones. No more nuclear winter. The rage leaves like a bad memory of a dream I once had. We touch again, unthinkingly, lightly, like leaves falling. We kiss. When she’s hurting I feel only compassion. I can see how hard she’s trying and how battered her heart is. Her brilliance begins to shine again. She can think more clearly around me, show her strengths better, be more competent. I can see how skilled she is, how amazing she is. I fall for her all over again, her eyes like hazelnuts and green pine bark, her hair a halo of curls. She crawls off the couch and chases Poppy around the house, who squeals with delight. The forest fire stops raging and I become a small fire in a hearth once again, bright and warm and safe to be close to. Banked against the cold night and able to roar if needed, but not burning down the house.

Life becomes a joy again. There’s pain around me, confusion, darkness, death. But a relief bubbles up through it all. She’s my Rose again and I’m worthy of her trust again. She lights down in my heart like a bird nesting. My demons murmur but they don’t run the parliament. The darkness is there between the stars in our eyes, the taste of death and blood. Our hopes like ships upon the waters. The smell of our baby in my arms, milky kisses on my cheek and the quiet steady ache of my arms to have her in them. Finding my way back to connection for each of my precious family. Remembering laughter is what makes the night shorter and less savage. 

And I’m blemished but no longer the snake in our nest. The knife in my smile is sheathed. She doesn’t flinch when I walk near, my beautiful love, my beloved. In her bad dreams she stirs and I wake. She reaches for me in her sleep, fingers tangled into fingers. My heart croons peace to hers like a dove. The joy in my world is like the moon rising. She rests her head against my heart. She rests her heart within my arms. I’m hers again. I’m hers. 

Holding spaces

Finding myself needing downtime, debriefing, and reflection space. So many conversations and experiences to digest. I recognise that lingering uneasy feeling of needing to stop taking in new experiences and find a safe place to slow everything down and unpack. 

I find myself thinking of the unpaid and often hidden and unrecognized work of the precious friends, mentors, and loved ones who hold a space like this. I’m seeing how to use such blessings more wisely and waste less time circling the same dilemmas. It’s a rare gift, space in which feelings don’t have to be rational or justified to be explored. I have worked hard to get better at doing it myself for myself and for others, to support people to feel genuinely safe, heard, and understood. 

I’m deeply grateful to Rose who has created this haven for me for years now, hours of conversations that at times seem pointless, confusing, frustrating. But that commitment to validation and reflection where I’ve been able to move out of personal journals and into relationship and conversation has been invaluable to me. Her love and skill and patience is a big part of why we work so well together. She is brilliant at listening, being safe for the vulnerable or traumatised, and remembering a my wildness and my darkness when I’m burned dry and can’t recall that I’m really a mad poet who has learned to mimic a regular person but I live, breathe, and recharge best out in the wilds, running along the edge of the night. 

I’m so blessed to have some friends who also hold spaces for me, online or face to face. Their timely connection has been the difference between lonely anguish and comfort, severe distress and pain I can howl out of my heart. I’m aware of how lucky I am.

I’m struck once again by how many aspects of therapy that are healing and helpful are also aspects of life and relationship. They don’t have to be walled away as trained skills available only in treatment, by those in regulated relationships. They can and often are part of the very best friendships, they are part of the love that passes between partners, parents, children. 

Eugene Gendlin recently passed away. I found his book on Focussing extremely interesting and helpful. I was intrigued that he didn’t take his ideas and lock them away in the exclusive domain of therapists, as is usual. Instead he considered focusing to be a skill any two people could learn and support each other in. Thousands of people have learned and offered this skill of holding space and listening to each other in support groups online and around the world. Precious, peer based. No power. No treatment. Connection. There’s nothing at all wrong with needing professional support. But I don’t like the locking of knowledge into silos, reserved for the experts and not recognised as the significant skill and profound kindness it is when we receive it in our personal lives.

Mother’s Day with Kids

It’s been a wonderful day, very precious to experience a Mother’s Day that didn’t feel like being eviscerated. Rose and I have had a day of tending. We’ve spent time with Mums and women who nurture, and reached out to a few folks who find today hurts. We soaked up the joy of our kids and talked through some of the sadness and yearning that’s part of today when there babies not here and Mother’s not here.

Rose took us to a forest and we breathed it in. She took this beautiful photo of me on the playground, wearing my awesome birthday shirt and boots.

We attended a couples massage class together which was beautiful and powerful and deeply needed. We sat and looked into each others eyes and cried. We touched each other and eased pain. It was one of the first times we’ve been alone together since Poppy was born, and the first that we didn’t use that time to sleep! (It was tempting) 

We visited my Mum and Star’s Mum and enjoyed gifts in bed and sat around a campfire and did no work or housework or admin at all, just connected with each other and our people. 

It was beautiful.

Poppy is sick

We’re currently in hospital with Poppy, who has some kind of terrible gastro and can’t keep anything down. We drove home from our camping trip a day early and brought her straight to our local hospital. That was a drive I’m not likely to forget in a hurry. She was admitted and rehydrated with a nasal gastric tube. Rose and I have been caring for her in shifts. Last night at 3am I took Star home and we both caught up on some sleep. It was the first night I’ve been apart from Poppy since she was born and if I hadn’t been so sleep deprived I fell asleep the moment I got into my room, I’d probably have had some big feelings about that.

​It’s so strange to be here feeling sad and scared when it’s such a minor issue really and there are really sick kids around. I feel like I’m making drama to be upset, feel like I need to get through this as quietly as possibly without drawing attention to her, in case somehow that means she comes in for something much nastier. At the same time I feel like she’s dying and it’s inevitable that we’ll lose her. I want to bite the nurses who tell her to stop making a fuss, and kiss the ones who touch her gently and are comforting. Just giving yourself permission to feel what you feel instead of measuring it against some yardstick of what’s valid and acceptable is hard but so helpful. Parenting is weird.

I’m trying to stay out of crisis. It feels like my life tips into crisis regularly at the moment and I’m under too much strain. I’m trying to find what I need to be okay. Dashing to the hospital after missing my bus stop this morning, the strain in my body was like my muscles were trying to teleport me there directly, such an intense need to be back with her. I thought about the line I’ve been using to calm my pain levels, from my cranial sacral therapy – breathe into your bones, and the journalling I’ve done around what that means to me- the breath that turns my bones from straining steel under pressure, back to living bone, that takes root like a tree and grows and bends beneath the storms. 

Thinking about the poems and images of wings and how the pain is where they would be if they were visible (I went to say if they were real, but that’s not quite the same thing) and someone had cruelly bound them together so I couldn’t fly. The way wings are related to my poetry, difference from others, my walking in other worlds.

So I walked back to the hospital a little slower and I breathed and felt the straining ease a little, the sense of tendons overtightened like guitar strings about to snap back off. Pain rushes back in with awareness, muscles are stiff but they move again, that sense of being locked shifts. My stride changed, the pain flared worse at first then eased a little, became mobile and moved around between different muscles, felt less like I was on the edge of tearing apart.

I called some of our tribe for help. Some chatted online with me, or visited the hospital with lunch, made us dinner, took Star food shopping for school, put on a load of washing of clothes and bedding with vomit on them… I concentrated on not falling off the edge of the world in my own head and forgetting that people care about us, or feeling guilty about our resources compared to so many parents. We are there for our tribe in many ways, it’s not manipulative or parasitic to call on them for help. I made eye contact and enjoyed hugs and soaked up as much as I could.

Rose and​ I, still negotiating our new roles, fielding the constant question of which of us is the mother, dancing between the needs of our girls and ourselves, having to find a new common language for this part of our lives. Things tangled this evening and our conversation to get back on the same page was the kind where 10 minutes in it feels horribly dangerous and digging into deep wounds and black places and you’re starting to wonder if you shouldn’t just abandon it now before it all goes to hell… But we passed through to understanding and found out way back together. I’m home again for a sleep now. Poppy is sleeping in hospital with Rose after a bath and keeping down the first feed in 24 hrs. We’re hopeful she will be well enough to come home tomorrow.

This was Poppy on camp before she became sick. It was very beautiful and my new tent -a birthday gift from Rose, was amazing and wonderful. 🙂