Parent Carer Collective: Rina Teslica

When faced with the unexpected, acceptance took its time. Here’s how this London mother found her groove – and immense pride and gratitude – in caring for her child.

Amid her baby’s multitude of medical needs, Rina Teslica felt more like a carer than a parent. But while her daughter still requires around-the-clock support, this writer and podcaster now feels very much a mama to her cuddly seven-year-old, Lua, who has a genetic condition called Noonan syndrome.

Lua’s early years came with some scares – one during a central London shopping trip, when she decided to dial up the drama by pulling out her tracheostomy tube (read on to discover how this played out). However, having settled into what she defines as very separate roles of parent and carer, Rina’s thrills are more often found in her true-crime addiction, by way of podcasts like My Favourite Murder and RedHanded.

“I’ve also just watched an incredible series on the Yorkshire Ripper, called The Long Shadow, that shines a light on how women in sex work were characterised during the 70s and 80s, to allow a serial killer to roam free in the UK for so long,” says Rina, who writes for online platform Cult Beauty and co-hosts the F**king Normal podcast with fellow parent carer Lauren Fenton.

An advocate for families raising children with special educational needs (SEN), Rina reflects on the challenges of caring for a medically complex kid – and how being Lua’s mum has given her a fresh, liberated perspective on life.

When we are expecting a child, we usually expect to be their parent, not their ‘carer’. Do you identify as a ‘carer’ to Lua?

Lua spent her first seven months in hospital attached to a plethora of machines and cables to keep her alive. I didn’t actually feel like a parent to her until she turned three and understood that I was her mum and not her carer. Because she was so medically complex we had – and still have – carers working in shifts overnight, in our home, watching over her to keep her safe.

Because of her needs, and the fact that they took over her development, it felt as though I was simply ‘caring’ for her to keep her safe and alive without any of the typical parenting involved for the first couple of years. It wasn’t until she was able to distinguish that my partner Arber and I don’t ever leave her, that I think she realised we were more special than the other people in her life.

It was incredibly disheartening to not get much back from her in terms of engagement when she was very small. Arber and I would joke quite often about whether she realised who we were and to this day we still say, “Oh she knows I’m her Mama or Baba” when she randomly gives us hugs.

We persisted and showered her with love and affection and now she is the cuddliest little girl in the world. She runs and gives us kisses. And when she first called me mama, that was the best day of my life.

Isolation is something we tend to grapple with as parents of kids who break the mould. What were your biggest struggles in Lua's early months and years, and what helped you during this time?

Once Lua came home, she was attached to a ventilator via her tracheostomy 24 hours a day. Simply leaving the house was a MISSION, especially if I were to do it alone. We lived in an apartment in an old house, with a load of staircases. That meant to leave, I’d have to take her buggy, nappy bag, emergency bag and feeding bag down three flights of stairs first. Then run up and detach her from the ventilator, racing as quickly as I could to get it into the buggy and then dash back up to get her to quickly attach her to the vent… all before she could turn blue. It was awful and I hated leaving the house alone. As well as that, the stares from the public were also incredibly difficult to deal with.

What helped the most was my mum and Arber. My mum would try and visit multiple times during the working week and made me leave the house. We’d go for coffee or just for a stroll, any excuse to get me out. Arber worked during the week so he understood that the weekends needed to be spent outdoors. He realised how difficult it was for me to be cooped up inside – I am a massive extrovert and love socialising, so being inside was hell.

I don’t think we ever spent a weekend inside, regardless of the weather, in those first two years. Plus, we understood how much Lua had missed out on so wanted to show her the world.

How did you start forming connections with other parents raising kids with disabilities, and what changed for you once you started forming these connections?

In all honesty I was in denial that Lua was disabled until she started going to school when she was three. I felt that I had been dealt the worst hand in life and that my life was over. I couldn’t and, more importantly, didn’t want to see the positive in anything. I found parents in similar positions as me on Instagram but they seemed to all be in Canada or the USA, and their children weren’t as affected by Noonan Syndrome as Lua was. It was helpful to see parents living happy lives, but I wasn’t ready yet.

Once Lua started school and I was thrown into the disabled community – whether I wanted to be or not – it really helped open my eyes. Not only to my own situation, but I saw parents who were in much harder places than I was, who were happy and thriving regardless of the difficulties they were facing. That really opened my eyes to how my mindset was holding me back.

I was then introduced to other parents and an amazing Whatsapp group of other wonderful women living their lives and parenting disabled children. It was a revelation. I now have an incredible group of friends and we created a podcast aimed at helping other parents with SEN children.

Nowadays, what does caring for Lua tend to look like?

Lua no longer needs her ventilator, hurrah! Although she still has her tracheostomy. It has become so ingrained in our lives that it no longer seems like a ‘medical’ thing. We are hopeful that in 2024 she may have it removed, which we are all excited but very nervous about. She still heavily relies on us for almost everything, even though she walks, uses [the language program] Makaton to sign and screams MAMA when I’m not quick enough to get her what she needs.

Can you compare your initial thoughts and feelings around parenting and caring for a child with disability to how you feel now?

I felt very, very sorry for myself when I first had Lua. I was so upset that I was missing out on all the ‘firsts’ and that my ‘firsts’ were not what I had imagined. I completely detached from the role of mother and looked only at myself as a carer. I think that was partly because it was easier to comprehend, but also because Lua wasn’t showing signs of understanding who I was. In all honesty, it made it much easier for me as I detached from the parenting side and concentrated on just getting her healthy and strong.

It’s such a difficult role to be a carer and a parent and I think each person finds their own methods of dealing with it. Deep down I hated being the ‘carer’ and having Lua only need me when she needed medical intervention. Now, as she’s gotten older and more independent, she needs less ‘carer’ and more ‘mama’ so how I feel about it has changed. I’ve gotten over myself and my ideology of having a child to only thinking about what’s best for Lua.

What do you find most challenging about being a parent carer? And on the flipside, what brings you the most joy?

The hardest part I find is having to make incredibly difficult choices in terms of medical interventions that I know will help her, but are difficult for her to undergo. It’s the fight over putting the carer hat on over the mum hat. There have been times where the mum hat has overridden the carer hat though, which was hard.

The biggest joy I have is the complete and utter trust Lua has in me. Because I’ve cared for her in a medical way since she was born, I can see how much she trusts me when we go into something medical. Even during blood tests or something small, she’s calm when I’m there as she knows that if I’ve given the green light for it to go ahead, then it won’t be so bad. We are incredibly close, and I think closer than what our relationship would have been like had I not been her carer first and foremost.

Humour can make tough situations and topics easier to navigate. What funny moments have you had while caring for Lua?

We have always been told that if Lua was to pull her tracheostomy out she would stop breathing, and if left out for an extended period of time she could die. The doctors instilled the fear of god into us if this were to happen. But, when she was around three, I was in central London shopping and she decided to pull it out. I always carry her emergency box to reinsert the tube but on this day, as luck would have it, I had forgotten the damn box.

I had a meltdown as I couldn’t physically reinsert it as much as I tried, and was watching in terror for her to turn blue. She didn’t. She stared contently at me and smiled. I ran like a headless chicken out of the store, into the busy street and stopped a black cab with tears in my eyes. I screamed HOME to the driver who looked blankly at me. I couldn’t keep my eyes off Lua and shouted my address and explained this was a medical emergency and that he needed to get me home as soon as possible.

We were a minimum of 40 minutes away from home, in busy London traffic, and I was experiencing a full-blown panic attack. Lua on the other hand was laughing. Big hearty laughs. She wasn’t even going blue, but I couldn’t keep my eyes off her.

We got home in 15 minutes and I’ve never been so happy to see my front door. Lua was fine, her oxygen stats were perfect and the tube went in once we got into the house. She now pulls the trachy out about 10 times a day and we just roll our eyes.

‘Self-care’ is a bit of a dirty word in the parent-carer space, as we’re often told to do it and rarely have the opportunity. If you do manage to get an hour or so to yourself, just for you (not chores!), what do you do?

I’m a big fan of yoga and pilates. I also love reading a good thriller or watching one on the big and little screens. Retail therapy is also another selfcare ritual I engage in — much to the chagrin of my partner!

Many parent carers need to step out of their careers to meet their child's needs. As a professional content creator and podcaster, how do you make work, work?

It took a long time to find a career that supported my need for flexibility. I also took six years out of work to figure out where I wanted to go and what I wanted to do with my life, away from being a mother and carer. Things have gotten much easier since Lua started school as it’s given me an extended period of hours out of the day that I can work through, and since finding my purpose as a beauty writer, work has been easy and enjoyable.

I also have much more respect for my work. I lost my identity when I became a parent carer so my work is my passion and something I will hold on to to ground myself. It also helps that it’s something so far removed from the disabled community and something I am genuinely interested in. In terms of making time for the podcast, I understand just how important it is for other parents so I will MAKE the time to do the pod.

Looking to the future, what are your hopes and dreams around how Lua is cared for and your role in her care?

I surround myself with people who understand my situation – my extended family and most importantly a wonderful partner. They all allow me space to be myself and step in when I struggle. Looking to the future I ultimately want Lua to not rely on others as much as she does. I want her to be as independent as she physically and medically can be, so that she is able to rely on herself more and more. Ideally I would like my role as her ‘carer’ to not be as much of a big factor in her life as it is currently. Selfishly, I want to be just her mother.

What do you wish other people knew about life as a parent carer?

I wish people understood that there is a clear divide between a carer and a parent. Although we wear both hats, in reality we are taking on the two different roles at different times. It’s incredibly difficult to balance them out, as sometimes one will take precedence over the other when thinking of what is in the best interest of the child.

It’s exhausting. Not only that, but the admin side of being a carer is a whole other can of worms that most people can’t comprehend. The sheer amount of juggling that goes on to successfully ‘run’ the life of a SEN child is vast and complicated, so I’d love people to understand that.

What advice do you have for parents who are new to caring for a child with disability?

It. Gets. Easier.

Once you find your groove, your life will run like a well-oiled machine. You’ll also find your approach to everyday life and the way you deal with little stresses EASY. Being a carer to a SEN child really puts things into perspective — which you’ll eventually find liberating.

What books/podcasts/TV shows/films/resources have you found relatable, inspiring and/or helpful as a parent carer?

The F**king Normal podcast! I know I’m the co-host so very, very biassed, but it’s a wonderful space for parents, especially those new to the SEN world, to hear from parents who have been in their shoes and gotten to the other side. I also found Special by Melanie Dimmitt incredibly important. It was as if I was reading my own thoughts on paper. And finally, the BBC series There She Goes is a really beautiful example of parenting SEN children.

Finally, is there anything else you'd like to add?

That I am incredibly proud to be Lua’s mum. It took me a long time to accept her and our life but she has brought me so much light and love and I am so so grateful she chose me to bring her into this world.

Follow Rina and Lua’s story on Rina’s Instagram account. Find out more about the F**king Normal podcast here and tune in wherever you like to listen to your pods.

Let’s clear out the complexities of care. Try Hibi for free here.

Want to share your parent-carer story? We’d love to hear it. Get in touch with our team at hello@hibi.health