Parent Carer Collective: Nuala O'Neill Marks

While “always on” in her caring role, this working mum of two relishes the laughs, joy and “glimmers” she’s found in parenting a child with disability.

Unopened issues of Grazia magazine are piled next to Nuala O’Neill Marks’ bed, waiting for the rare moment she gets to herself. In the midst of managing major home renovations and modifications for her wheelchair-using eldest daughter, Erin, Nuala describes life as “manic”. But she’s proud of how far their family has come.

Erin was born with hypoxic-ischaemic encephalopathy (HIE) and, as a result, was diagnosed with quadriplegic cerebral palsy at the age of one and epilepsy at three. She’s now a happy, funny and kind seven-year-old living in Greater Manchester with her sister, Ottilie, who’s two. Parents Nuala and Steve recently celebrated their 10th wedding anniversary.

Nuala is the deputy managing director for a PR agency and, when she’s not with her children, working or coordinating home renovations, she likes to get her nose in a book by Dorothy Koomson, whose story lines make her life “feel semi-normal”. She might even give that growing pile of Grazia magazines some attention.

Here’s what Nuala had to say on the beauty and busyness of life as a parent to a child with around-the-clock needs.

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

I still find the word ‘carer’ a tough one, I have such a love-hate relationship with it. I rarely see myself as one and I rarely refer to myself as one. I find the word ‘carer’ a clinical word. It feels so unemotionally involved. It’s a word I find very hard to describe myself as, because I’m just Erin’s mum.

Erin was our first child, so up until Ottilie arrived – when Erin was almost five – I just thought dressing, feeding and watering was all part of parenting. The chasing appointments, meeting consultants, hounding down meds, carrying out physio exercises, inputting into EHCPs [Education and Health Care Plans] – I thought that was my role as a parent.

Obviously, subconsciously I knew not everyone did this, but this was my version of parenthood and the only one I knew. It’s only in the past six months that I’ve really started to think about the word ‘carer’. Ottilie coming along has probably been the catalyst for change.

Over the past few months I’ve seen Ottilie feed herself, go to the toilet herself, brush her teeth and vocalise whatever is on her mind. I don’t have to wheel her to a device to know what she’s thinking. Ottilie has become a full on, independent two-year-old. We now know what parenting a neurotypical child looks like, but it’s amazing how doing something for so long and not knowing any different can become your perception and norm.

What does caring for Erin tend to look like on a day-to-day basis?

Caring for Erin is a 24-hour job. She regularly wakes in the night for the toilet or to be repositioned. She needs support with everything from moving to feeding, toileting, drinking, playing and accessing her communication aid. There isn’t anything that Erin needs or can do, without us helping and facilitating. She needs someone – if not two people – by her side at all times.

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

When Erin was born, we were told it was unlikely that she’d make it through the night. At less than 24 hours old, we were asked to leave the room when she pulled out her ventilator. We were quickly ushered back in to see her breathing by herself, because they were unsure how long she’d manage it for. I should have known then that she’s a feisty little character.

I remember those early weeks being so bleak and the feeling of wanting to run away from it all. I literally felt like my heart was broken and it would never heal. The not knowing, the uncertainty, the anxiety – it was so consuming.

When Erin was a week old, we were told that it was inevitable that she was going to be disabled and we needed to go home, get upset and get over it. You’ve got to love some doctor’s bedside manner! If only it was that simple right?! Disability can be so wide-ranging. I would constantly get stuck in the future and what life would look like.

I remember thinking I’ll never be able to care for her when she gets older. How will we manage when she goes to school? How will she communicate? How will I know she’s in pain? But you do and you will. You understand your child better than anyone.

In the initial stages it feels very overwhelming. You wonder how you’ll get through the weeks, nights, days. But things change. As they get older there are different focuses, different needs, different demands. And whatever current situation fills you with the most anxiety, when you get there, it truly is never as bad as you imagined. Your mind and your strength has adjusted along the way and it makes it all manageable.

I’m no longer full of trepidation when caring for Erin. Instead, I’m proud. Proud to be her mummy, proud of how far she’s come, proud of our little family and how we’ve weathered and come out on top of a very difficult situation.

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

Without a doubt, the guilt and the ‘always on’. The two things are so intertwined. I find the ‘always on’ nature of caring for Erin so relentless. The getting up in the night, the feeding, the drinking, the playing. It’s non-stop. It’s like having a newborn. Constantly.

Yet ironically, when I do get that time to step away, I feel guilty. I worry about how Erin is. Has she got everything she needs? Is she going to be okay? Should I be taking Ottilie somewhere that isn’t accessible for Erin so she’s able to experience more things? Should I be doing chores, texting friends back? It’s non-stop. The ‘always on’, then the guilt. It’s a never-ending cycle.

However, Erin’s laughter brings me the most joy. Her excitement, how secure she feels, how confident she is. The way she enjoys life. She has more reason than most to feel sad, frustrated and angry. Yet, she laughs, she brings joy. She’s the most magical thing.

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

The moment that will forever stick out for me was when Erin was about three days old. She was tube-fed when she was first born, and I had been expressing for what felt like an eternity, every day and night.

There is nothing more heart wrenching than setting your alarm at night to express while your baby is lying in a bed in NICU, five miles away from you. All those mothers who have done that will appreciate how much hard work it is, especially in those early days when you have the golden stuff, before your milk comes in.

I’d managed to get the golden stuff and Steve was drawing it from the bottle into the syringe, so that he could tube-feed it to Erin. However, instead of pushing it through Erin’s tube, he pushed the syringe so hard, without it being connected, that the milk shot out of the syringe and landed straight in my face!

I cried, then we both laughed so hard. It was the first time we’d laughed in days.

As Erin’s got older and her wild sense of humour has taken hold, she regularly has us in stitches during the bedtime routine and this is much needed, as this is the longest and most physically demanding part of caring for her.

One bedtime, she wanted to know why she has cerebral palsy. I always thought Steve and I would be prepared for this question as we’d been rehearsing it in our minds, but she caught us both so off-guard.

It’s kind of irrelevant what was said now, because her only takeaway from the conversation was that one of us had dropped her on her head at birth and that’s why she had an ouchie. And that’s typical Erin, bringing humour to the situation since 2016.

‘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?

The guilt you feel when you get the chance to have some self-care is ridiculous and nobody will ever understand that unless they’re in our position. However, my favourite things to do are to get a facial or acupuncture. Or, if it’s time out that I’ve just happened to get, I sit on the sofa with Grazia, a cup of tea and a bag of chocolate buttons and the world feels calm.

What supports have you put around yourself – or do you hope to put around yourself – so you can be your best version of Erin's parent carer?

We’re very lucky that we have my parents who are an incredible support, along with my sister and her husband. They ensure Steve and I have regular date nights, they take Erin out and my parents, who live an hour and a half away, will even facetime Erin and play teachers with her for hours on end. I’m sure they do it to give us a break, but I also know they do it because they love her so much and get so much joy from her.

Erin also had a fabulous one-to-one aide at preschool who is still in our lives and babysits for Erin, which she loves.

As well as my family, we’ve had a nanny for Erin since she was two-years old. Steve and I joke that if we’d not had that, we’d have been divorced by now. Steve travels regularly with his job and my job isn’t a 9-5, so we needed that support.

Personally, going back to work has allowed me to be the best mum for Erin. I needed that time to think about something different and to be something other than ‘Erin’s Mum’. Of course, going back to work was a personal decision – one that worked for us and our family.

How has your relationship with Steve changed since you became Erin's parents? And how do you two juggle your carer/parent roles between the kids?

Steve is the most incredible dad you could ever meet. His girls are his life and he’ll do anything to ensure that Erin has access to everything. He recently raised over £25,000 for the local park, so they could purchase inclusive play equipment. This means that any child with disabilities near us now has access to a park where they can play with their siblings and friends – just as childhood should be.

I think we both separately struggled when Erin was born and we both responded to that grief in different ways. We both still deal with things differently but, luckily, more often than not, when one of us is in a bad way, the other one will carry them through.

Since having Erin I think we’re both better people, we have a better perspective on life and on what’s important and I think that’s had a positive impact on our relationship.

We both value the importance of each other and our relationship, so we always ensure we have once-a-month date nights where we go out, just the two of us. But we also know how important it is for us to have our own things, whether that’s the gym or football or golf – because work can’t be the only time out for both of us.

In terms of how we juggle between our roles and the kids, I would describe that as chaotic. Sometimes we get to the end of the week and we’re both unsure how everyone is fed, has arrived in the right place at the right time, in clean clothes and has had a happy day. But somehow, we muddle through.

We’re big believers in getting on with life, but sometimes you need to check out, sometimes you can’t do things because Erin’s ill, or she’s tired, or you’re exhausted. It doesn’t mean you don’t want to be a part of what’s happening, it just means it’s too much. And sometimes that’s okay.

Is there anything you’d like to share about Erin and Ottilie’s relationship, too?

I find it incredible how natural Ottilie’s kind and caring nature is. Nursery will regularly tell us that if a child is upset, she offers to give them a cuddle. She plays with dolls, rocking them, feeding them, pushing them. She’s two years old and she communicates with Erin in the same way we do, using her hands to make choices in the absence of Erin’s eye gaze device. But she does it all so naturally, like it’s the type of communication that goes on in every household up and down the country. It’s special.

I spent many a year worrying about how Erin would respond to Ottilie when she hit milestones. We had to have IVF for Ottilie, so it felt like every element of having another child was over thought. However, Erin enjoys Ottilie more than I could have ever thought possible. She’s enriched her life more than I would have allowed myself to believe. She makes Erin belly laugh, but Erin’s also so proud of Ottilie.

Whenever Ottilie hits a milestone that Erin can’t do, Erin is her biggest fan. She’s bursting with pride. If there was a hint of sadness somewhere in Erin’s bones, you can’t see it. Erin show’s everything in her face, so I like to think she’s genuinely happy for her little sister. I hope they forever love, cherish and protect one another.

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

My only hope for Erin is that she’s happy and her fire never goes out. Erin lightens up every room she goes into and I’d hate for her to lose that.

She loves a full house, she loves to entertain and be entertained. I want her to never lose her love for being around other people. I want her to forever feel comfortable around people and to never have to apologise for the things she needs help with.

We’re more at ease now with what Erin needs than we were when she was three. I think like everything, it’s about building the right team around you. We know we’re forever going to have to build and sustain a care team around her, but Erin brings the best people into ours and her life, so we just trust the process.

I will forever be Erin’s carer in some capacity – I’m her mum, after all – but I hope that one day she has the confidence to say, ‘Mum I don’t need you for that, so-and-so is helping me’. That will mean she’s reached the stage where she’s comfortable with someone else and she’s confident in them helping her.

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

You will smile again.

You are the BEST doctor for your child.

Don’t ever be afraid to challenge a medical professional.

You will have to fight. Like you’ve never fought before.

I know it hurts to think that your child might not walk or talk – but it really isn’t as defining as you or society makes you think it is.

Build a good team around you, including healthcare professionals and school support. You can’t do it all on your own, but with the right people and the right help, you can fly.

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

Dr Karen Pape was my lifeline in those early years. I couldn’t read her books, papers, or commentary quickly enough. Special by Melanie Dimmitt was the most relatable book. I have pages folded over in it that I still regularly refer to.

Also, building a community. Instagram has been incredible for finding my people – the ones who help out with advice, tips and making me feel heard and seen. Just knowing you’re not on your own on this journey helps – and knowing that your feelings are valid.

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

I’d be lying if I said the pain goes away. It never truly fully disappears. When Erin was first born, I couldn’t get through a day without crying, but as the months have turned into years, it’s become easier. It still hurts from time to time and there are certain smells and noises that I find triggering. However, when this happens, it’s fleeting. It never stays for very long.

I guess you just learn to live around the grief and sadness that undoubtedly will be there forever. But you appreciate life that little bit more and you live for the glimmers – there are plenty of glimmers in parenting a child with disabilities.

Follow Nuala’s story on her Instagram account.

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