Parent Carer Collective: Eliana Joseph

As a parent to a very rare gem, this former teacher is learning more than she’d ever imagined.

In the sunny, south Sydney suburb of Gymea you’ll find Eliana Joseph and her family – her husband Michael, their seven-year-old daughter, Leah, and their son, Luke, who’s three years old and keeps his mother very, very busy.

“At times, I feel like the carer role can overtake and you can lose your sense of being a parent in difficult moments,” says Eliana, whose youngest shares a rare genetic muscular condition, affecting the TNNC2 gene, with only five other known people in the world.

“There are often times I have to step back and make extra time in my day to be Luke’s ‘mum’ and not his carer. I try my best to make some time to play with him and laugh with him and just enjoy him.”

A former primary school teacher, Eliana tackles the overwhelm of caregiving with solid routines and meticulous organisation. She’s also found her people – an online community of parents caring for medically-complex kids – along with new, flexible work as part of theTubie Funteam, supporting other families in the tube-feeding community.

Read on to learn how Eliana found her feet as a caregiver and the advice she has for others.

When did you start to identify as Luke’s ‘carer’?

Slowly throughout his journey – and as I became more and more confident in the role. In the beginning, I felt like I was just thrown into the deep end and was instantly in survival mode. But as set routines developed and life continued, my role as his carer became more clear. Particularly after diagnosis at 16 months old, when the focus went from ‘why’ to ‘how can we best support his needs’.

What did you find most challenging in the early stages of navigating Luke's developmental differences? And what helped you during this time?

In the first year of life there are so many exciting ‘firsts’ that babies generally reach. Having already had a typically developing child, I was really looking forward to reliving those moments again with Luke. When those moments came and went my heart did ache for him. I would take him to baby classes and see the other babies his age doing all the things he just couldn’t and it broke my heart.

I was sad for him, I was sad for everything he had been through, I was sad for what he was missing, I was sad seeing him struggle.

It’s so hard not to compare – it’s a natural thing we do in all aspects of life. I don’t believe it comes from a bad place, but more of a ‘what life would have looked like’ perspective. We had already been through a lot of difficult and painful experiences so it did hit me hard. No one wants to see their baby struggle or ‘fall behind’.

I let myself feel the hurt and the sadness and when I was ready, I reminded myself of all of the hardships he had faced that none of those other babies had been through. I remembered all of the amazing things that make Luke, Luke. And the special things he can do that many other babies can’t, such as using Key Word Sign to communicate.

Despite his challenges and developmental differences, there was still a smile on his face and to me, that is what really matters. He is loved, he is happy and he is uniquely himself.

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

I started forming connections with other parents going through similar journeys through online social media platforms. Instagram is where I have made some amazing friendships. I felt much less alone in all of this once I started making connections with other parents going through similar things. I had found a community I was able to reach out to when I needed advice or had a question I needed answered.

I have found that, sometimes, we learn the most from other parents – particularly when it comes to seeing what tube-feeding looks like in day-to-day life. It’s those kinds of things you don’t learn from the professionals, but from others who are living this every day.

Forming these connections and friendships allowed me to find my new ‘normal’ and to relate with others. I will often chat online to friends and vent when things go wrong or life is just tough at the moment… and they get it. There is never any judgement, just understanding, which is so reassuring to have as so many of my previous friends and even some family just don’t understand what it’s like to go through a medical life with your child.

Why did you decide to start creating social media content and sharing some of your experiences – and what impact has this had on your life?

I first started posting about what was happening with Luke just to update friends on my business Instagram account. I then had other mums messaging me, wanting to connect as they were going through similar experiences. The more and more I posted, the more parents I had reaching out. I then decided to change my Instagram handle and dedicate it to sharing our experiences with tube-feeding and the journey we were on with Luke.

I have made so many wonderful connections by doing this and I also have a lot of other tubie parents reaching out for support or someone to chat to. I really like being able to give a helping hand where I can, especially knowing how scary this journey can be. It’s also important to share awareness and teach others about tube-feeding. I’ve had many friends messaging me, acknowledging how much they’ve learned about tube-feeding from my posts.

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

One of the things I find most challenging is the huge responsibility – and how the majority of it falls on me. Yes, my husband helps, but he works full-time and I am the one who looks after all of Luke’s appointments and everything else he needs. If something needs to be done, it’s me who does it. I prepare all of his feeds, I organise all of his medications and NDIS [National Disability Insurance Scheme] funding, arrange and attend appointments, do therapy at home and communicate with doctors and therapists.

If there’s a situation which requires emergency care, I am the one who takes him. If he’s unwell, I am the one looking after him and monitoring him.

Yes, others have offered to help. But at the end of the day, I am the one who knows Luke’s condition, his needs and medical history the best, so I need to be at his appointments just as much as he does!

This has often led to plans being cancelled and I have to miss out because I am Luke’s main carer – which can feel really deflating, especially as opportunities to socialise and ‘get out’ don’t come around too often. That being said, I would do all of that and more, over and over again for Luke. He is just such a delight and has the sweetest, funniest little personality.

It is Luke, himself, who brings so much joy and happiness to our lives that the huge responsibility that comes with caring for him is outweighed by the joy he brings. And like many mothers, I would do anything that needs to be done for my children.

What is Luke's relationship with his sister, Leah, like? What do they tend to do together?

Leah and Luke have a really beautiful relationship. Yes, they fight and argue like most siblings but the love, care and empathy they show towards one another makes me really proud – particularly Leah. She is incredibly caring and nurturing towards Luke.

When they play, being the older sibling, Leah often takes the lead and Luke joins in. They like to dance, play on the iPad, colour in, jump on the trampoline, kick a ball around in the backyard or race Luke’s cars and play make believe. They are really easy going kids who enjoy just about anything and Luke really just loves to be involved with his sister.

Many parent carers need to step out of their careers to meet their child's needs. How has your working life changed since becoming a parent – and how do you feel about these changes?

I was previously a primary school teacher but haven’t worked full-time since I was pregnant with Leah. I didn’t plan on going back to work full-time while the kids were young, but I did get back into some casual teaching. It was so great to be back in the classroom, reliving a part of my ‘pre-kids’ life, doing what I loved and earning my own money – independence!

I did do some casual teaching not long after Luke turned one, but having such a limited number of people who were able to care for him made this really difficult. So I focused on the kids and my small business,The Handmade Baby Boutique, to keep my mind busy on other things.

When Stacey fromTubie Funreached out asking me if I wanted to join her team, I was so excited because the tube-feeding community is something I’m passionate about, too. I now work a job from home that is flexible and understanding around my life with Luke. I have that feeling of personal accomplishment back in my life and am really enjoying what I am doing. Maybe one day I’ll go back to teaching… maybe I won’t.

What supports have you put around yourself – or do you hope to put around yourself, as a carer?

I am a very routine-based person and have my own way of getting on with things. I have my mother in law, who is always willing to help and this means I can have a break, go to an appointment, or spend time with my daughter.

Luke also goes to daycare two days a week, which is a fantastic opportunity for him and also gives me some time during the week to keep on top of everything else, like his supplies, NDIS paperwork and arranging appointments.

From an emotional perspective, a lot of my support comes from other parents who are going through similar journeys. I do have family and friends who offer their support, but it can be difficult for them to truly understand the ins and outs of caring for a child with medical needs.

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

I wish other people knew how much hard work goes on behind the scenes. It can be exhausting on so many levels, physically and emotionally. There is so much more involved than what meets the eye and it really is a lot to take on – even more so when you have other children to care for.

I love it when people quietly acknowledge Luke’s feeding tube. We were out once for dinner while away on holidays and a lady on the table next to ours looked at Luke, smiled and said to her family “look that little boy has a feeding tube!”.

Another time we were at my daughter’s gymnastics lesson and another child looked at Luke, pointed and said to their Mum, “what’s that?”. The child’s mother responded: “That’s his feeding tube, that’s how he has his milk”.

It makes a huge difference when you hear these kinds of conversations happening – as opposed to the constant stares we get from others. I understand that some people may not know what tube feeding is – I certainly didn’t – and that they may be curious about what we’re doing, but it doesn’t make the stares less painful.

I try not to let it upset me or get to me but it just does. And this is why spreading awareness is so important.

What advice do you have for parents who are new to caring for a child with disability and/or developmental difference?

My advice to new parents is take each day as it comes. Try not to look too far into the future as the future can be a scary and overwhelming place. Don’t compare yourself or your child to others, as you’re all running a different race.

Being thrown into an unexpected new way of life can be daunting and overwhelming. Let yourself feel all the emotions – fear, anger, love, happiness, grief, nervousness, joy. If you stop yourself from feeling all of the emotions, you’re going to become unstuck at some point and end up just torturing yourself.

Finding acceptance within the cards you were dealt will bring you peace and make this journey so much easier for you to be able to manage.

But be kind to yourself. Acceptance and peace doesn’t always come naturally and can take a long time. Take your time and find your new rhythm. Change can be scary, but change can also be a big step in the right direction. Find your support system across all areas. Find your people who understand your concerns and worries but can also celebrate your joy.

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

I am really happy with Luke’s current level of care and I hope this continues as he grows and moves onto school. Luke attends daycare two days a week and often goes to my gym’s creche. I have never met more genuinely caring people than the ones who care for Luke across both these settings. They love him dearly and truly want the absolute best for him. They are all so eager to assist him in any way they can and to learn all about his needs. I honestly couldn’t ask for anything more and really hope he continues to receive this level of care as he gets older.

Looking to the future does make me feel very anxious. I have many worries about how his care will look as he gets older and becomes more independent. It’s also daunting not knowing how long I will hold this responsibility for. The idea of cleaning syringes and preparing blended meals for years and years to come can be an overwhelming thought. I’m three years in now and I’m exhausted!

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

The first book I read since having Luke wasSpecialby Melanie Dimmitt. I found this so incredibly relatable to our journey, particularly at the start of our journey when our world was a terrifying place. After reading ‘Special’ I then quickly found my way to ‘The Blend’ magazines, also written by Melanie Dimmitt which are full of incredible resources, educational articles, recipes and personal stories.

Melanie Dimmitt has recently released an incredible podcast calledTubie Talkswhich I loved listening to. This podcast shared stories of a range of tube fed people and gave us an insight into their day to day life and what brought them to being tube fed. I really loved listening to the various perspectives.

Another podcast I also really enjoyed listening to wasDear NICU MamaandRAWR The Podcast. Both of these podcasts covered a range of topics about mothering children who have had a rough start to life. I found these podcasts really relatable, too.

You can follow Eliana’s story on her Instagram account .

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