Over the next couple of weeks we’ll be introducing you to contributors to The Spinoff Parents, our new parenting blog edited by Emily Writes and made possible by Flick Electric Co. Today Kiki Van-Newton explains how her rock ‘n roll lifestyle was turned upside down by the birth of her first child.
Kiki Van-Newton is a bright and shining star. She’s a rock goddess and I’m so proud to introduce her to you. Our children met many years ago and we clung to each other as we tried to navigate the world of having sick kids. I asked her to write about her journey as a parent so far – she spoke this piece to a group of mums at an event a few months back, and we proudly share it here at The Spinoff Parents. Thank you Kiki – Emily.
Before we had kids my partner and I had it all mapped out. We had our short, medium and long term plans and we had savings, in-jokes and adequate sleep. I had a colour-coded wardrobe of vintage outfits and my partner spent her time studding belts and denim jackets. We stayed up late and we drank beer and we danced at bars and rode our bikes everywhere and went on road trips and paid attention to our hairstyles and were generally badass.
We were punk rock hooligans who had played music together since we met. We’d toured up and down the west coast of the States, playing at punk houses and record stores and street parties. We’d recorded in Portland with the same sound engineer who worked with Dead Moon and in our minds music was like, totally our destiny. We often said things like ‘ROCK N ROLL SAVED MY LIFE!’ and really meant it. The most important thing in our lives at this time was our band.
But we also knew that we wanted kids. And I know I’ve painted a picture of myself as probably pretty irresponsible, but actually I am like, so safety first. So in my rationalising way I had factored in lots of possible difficulties with our procreation plans.
Maybe the tried and true lesbian turkey baster method wouldn’t even work and we wouldn’t be able to have a kid. This would be awful and sad and difficult but we’d be okay. If it did work, maybe we’d have a colicky baby. Maybe I would end up with a medicalised birth and my vagina would be torn to shreds. Maybe we’d buy a pram from the dump shop and it wouldn’t work properly so we’d have to go back to the dump shop and buy another pram that did work.
But you know what I thought? We’d get through it, any of it! These challenges would only bring my partner and I closer together. And our best friend who was also the drummer in our band would be the best aunty in the world! And of course it would be hard, but what if we did end up with a baby?!
Logically we’d have to have a hiatus from playing shows for three or four months while I did gentle exercise such as mum and bubs yoga, but we could use this time to write a lot of new material. Once I could fit back in to my denim skirt with the ‘fuck capitalism’ patch hand-stitched on then we’d put our baby in its new dump shop pram and head over to Australia for a tour. Maybe we wouldn’t even come back. Maybe we’d set up shop in Melbourne, live in a share house, work part time at a vegan deli and really concentrate on Being Musicians.
Because destiny, right?!
I did a lot of research around all this. I read Our Bodies Our Selves and learnt all about cervixes (or is it cervices?) and spoke to many lesbians about how to get sperms into vaginas. I talked to parents who were musicians who toured with babies. I bought a book called My Mother Wears Combat Boots and read it cover to cover, along with millions of zines written by punk rock mothers.
And then finally I got pregnant.
And it fucking sucked. I felt like I had a brutal hangover for four months. Which I now know is getting off lightly, but at the time I wanted all of the sympathy the world had to offer. Pregnancy just didn’t suit me, which I found both shocking and disappointing. I didn’t glow and I didn’t feel like I was nourishing a life. I felt like a parasite was sucking my energy and my identity through the walls of my uterus and I wanted a day off. The thing that kept me happy during this time was my band, which was a grounding reminder of Who I Was. We started recording an EP and when I was eight months pregnant we played our last show as a band of three.
A few days later I had my weekly midwife visit and she said “the baby hasn’t grown”. And that was the beginning of a landslide.
I went for an ultrasound and the sonographer said the baby was small and had a heart arrhythmia. My midwife phoned and told me to meet her at the hospital. The obstetrician spent over an hour scanning my belly and then told us the baby might have a type of dwarfism called achondroplasia.
We had many more scans and met with a medical team who advised us to proceed with genetic testing by way of amniocentesis. We were told our baby might not be viable.
I cried a million tears and my heart tried to wrestle its way out of my chest and I thought I would die but I didn’t.
My mum came to stay and made us start eating fish. And then at 39 weeks I was booked in for an induction. Our baby was estimated at just over 1.5 kilos and had a small ribcage and most likely wouldn’t be able to breath on its own.
And after a brief induction and emergency caesarean this perfect miniature baby was born and screaming. She was my child and I loved her so much I wanted to absorb her right back into my core.
The first six weeks of her life were spent in a single over-heated room in our draughty house. She was so tiny but she could breathe. The heart arrhythmia had resolved. Everything looked like it would be okay. And then at six weeks old she got really, really sick. The paediatrician who had examined her at birth took one look at my child and ordered blood tests. She was severely anaemic and severely malnourished. And that was the first day of a nearly two month stay in hospital.
There were so many tests. So many vials of blood taken. So many medications. Specialists from around the country. More genetic testing. A blood transfusion. Pneumonia. IV drips of antibiotics. And the beginning of nearly two years of naso-gastric tube feeding.
Six weeks spent in a single protective isolation room with all medical staff and visitors donning gowns and masks.
I barely left that room except to receive the food that our incredible community of friends prepared for us every night, or to do our laundry in the family room. My partner bought a foldout bed and we camped out in that room on either side of our child’s cot.
And I forgot about life outside the illness. I was no longer a punk rock hooligan. I was the parent of a very sick and fragile child.
My daughter has a rare congenital condition called Shwachman Diamond Syndrome. This disorder affects mainly her pancreas and bone marrow. She takes enzyme medication with everything she eats and she is also immune deficient.
A temperature of more than 38 means she’s immediately admitted to hospital for IV antibiotics. Were she to contract measles she’d have only a 50% chance of survival.
This illness has changed all of our plans. We have had to remap everything in order to keep our child safe.
We don’t send her to kindy or daycare because the risk of catching a cold or gastro or something worse is too high. We can only socialise with friends who are fully vaccinated. Our house has a strict hand sanitiser policy.
As you can imagine it’s hard not be consumed by something like this. For three years I was solely the parent of a sick child. That became my identity and my focus and it completely destroyed my mental health.
I was navigating unrelenting waves of grief and guilt and I thought that by focusing more on the illness – by constantly searching for more ways to protect my child – I might be able to stay afloat and maybe even learn to control the swells. I pumped breastmilk for her feeding tube for over two years. I engaged in online arguments about vaccination which left me shaking with fear. I woke up terrified every day, but I put on a brave face and shut out the world and rewatched every episode of Roseanne over and over and over.
But none of this helped calm me and instead I felt even more out of control. Not only had I lost my map, but I’d lost myself. I was a complete wreck.
And then just before my daughter turned three someone asked our band to play a show. And this was a real turning point.
Our first show after over three years was so life-affirming. All of our friends came. We played five songs and people danced and up on that stage I wasn’t the parent of a sick kid. I was creative and I was wild and I was strong. I was a musician.
And this was such a lightbulb moment for me. It was like the first rain after a prolonged drought and my spirit sucked it all in. That show was the beginning of my recovery. It was the beginning of me rediscovering who I was.
I am not just a punk rocker, or the parent of a sick kid, or a medical researcher or amateur nurse, or someone grieving and weighed down by guilt.
I mean, I AM still some of those things, but more than that I’m tough. I’m resilient. I know how to ask questions and I know how to ask for help. I am good at wrangling babysitters and making gig posters and making sure my kid takes all her medicine and scheduling hospital appointments and writing songs. I’ve loosened up. I’ve learnt to share the load. I am still the best protector I can be, but I now also understand that a life worth living isn’t a life without risk. A life worth living is a brave life.
And the epilogue goes like this. We have another kid now too. She’s one, and she’s huge and robust and will eat everything put in front of her. She is the adoring shadow of her big sister. And sometimes the kids have to come with us when we play shows, but mainly they stay at home with their Gran or one of their many loving Aunties.
When they do come with us I know they are watching their mums stubbornly redraw the maps by overtly being mothers on stage, by insisting on accessibility for children and people with health needs, and by not giving up on our dreams.
In future our band has tours booked that will see us being away from our kids for days at a time. And I’m nervous about this, but I know that their Gran will take them to the park and to the beach and to the ice-cream shop. And I know that my mum knows how to protect my oldest daughter and keep her safe. I know that her Aunties know how to measure out her medicines and take her temperature. I know we have a strong and fierce community around us who have been with us through it all and who really care about our kids. I no longer feel alone and weighed down with this huge responsibility. Sharing the task of protecting my oldest child has also meant I’ve shared my worries, and this has been the most incredible relief.
And so while I’m nervous about being away from our kids, I also know that them seeing me be tough and resilient and creative and brave is so valuable. I want to be their protector but I also want to be their inspiration, and I hope that as they grow they absorb some of me into their core, so that they can learn how to be tough and resilient and creative and brave too.
Kiki Van Newtown is the parent of two kids, and raises them on a diet of hashbrowns, soysages, and feminist discourse in the upper Lower Hutt. In between convincing young children about the merits of wearing pants and bringing home some bread and butter, Kiki performs with her wife GG and best friend Liz in their band HEX (check out their Facebook page here). She will blog semi-regularly for The Spinoff Parents.
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The Spinoff Weekly compiles the best stories of the week – an essential guide to modern life in New Zealand, emailed out on Monday evenings.