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Commemoration Ceremony

19 June 2023

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Opening words by Kathryn Chalker

Layla has been laid to rest at Woronora Cemetery in a small private ceremony. She is here on Dharawal land. She was born on the lands of the Blackfoot Confederacy and the Métis of Calgary, Alberta in Canada. In fact, Layla is currently warmly wrapped in a Métis papoose given to her family to bring her home by her surrogate mother, Sara, who has come from Canada to be here today.

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Layla was a warrior who took on unimaginable trials with the most beguiling of smiles. You, in fact, had to be careful when you looked into Layla’s eyes because there was no chance for you other than to fall in love - as many of you here today know. 

Layla is now a celestial being as her Arabic name suggests; the dark night of pure possibility – like that of Genesis itself. Her dark soulful eyes were portals to pure possibility and endless altruistic love.

Sara, Ghaith, Costa, Pan and Layla’s Yiayia Yiota welcome you and thank you most sincerely for your comforting presence. Today is our opportunity to receive Layla’s inheritance and feel the gratitude that wells up when we reflect on … and her significantly important life. 

The wave of care and support that she summoned proved, that as we suspected from those eyes of hers, a Godly force was in her. 

 

She had two stars named after her when she passed away. One was by Vanessa McKirdy, the Director of Cronulla nursing who has asked to speak to you today in honour of our little hero.

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Vanessa McKirdy

Good afternoon, my name is Vanessa.

Firstly, I would like to thank Ghaith, Costa, Pan and YiaYia Yota for the opportunity to speak today, and to honour Layla.

Curious, courageous and captivating Layla.

I would also like to thank Lauren Buck from Lifestart for her amazing empathy and generosity, working tirelessly to ensure Layla and her family would receive all the support required to enable Layla to reach for goals and enrich her quality of life.

 

Today I speak on behalf of the nurses and carers that had the privilege of knowing and caring for Layla and, her amazing family. 

Collectively we referred to ourselves as Team Layla, and we were led by coach Layla.

Like any great leader, Layla rallied and inspired her team like no other. 

Within our team, a number of very experienced nurses initially met up with Layla and her wonderful family, with the intention that the most experienced of nurses would spend several nights identifying Layla’s complex needs and communicate this to the remainder of the team.  Now, these nurses have done their fair share of night shifts over the years, like a right of passage, nights are generally left to the younger nurses, however, one night with Layla and all this changed.  I think this can be summed up by the words of Nurse Luke:

 

I was introduced to Layla -  looked into her eyes and it was all over. I was under her power. I rarely do night shifts, but I did four nights straight that week. I was hooked.

Layla had that ability to draw you in, it never felt like work when you were with her, and I often found myself willing her to wake up for a cuddle overnight.  It was not always easy, especially when she was in pain, but we battled through, and Layla rewarded us with her smile.

 

As a team we spent only a few months caring for Layla, but she had us all hooked and there was never a time when a night shift went unfilled.

Upon hearing of Layla’s passing the team were shocked and incredibly saddened , our hopes and our inspirational leader had left us.

Layla’s passing initially left a void in the hearts of even the most experienced of our team yet , even at rest,  coach Layla has managed to fill this.

As nurses and carers, it is the nature of our profession to care, comfort and enable, as well as to frequently experience great loss. 

When this occurs, it is human nature to seek comfort and reason and we often measure this in years and experience.

 

“A long life, well lived.”

When a child passes, we find little comfort in this reasoning and are compelled to reassess, “A life well lived”.

 

I would like to read a small part of a quote by Vi Keeland, called Left Behind:

“We cannot judge a biography by its length. Nor by the number of pages in it. We must judge it by the richness of its contents. Sometimes those unfinished are among the most poignant. We cannot judge a song by its duration. Nor by the number of its notes. We must judge it by the way it touches and lifts our souls.“

 

Layla’s enduring legacy can be measured by those souls she touched and lifted, her courage, trust and determination and the boundless love she shared and received.

Layla and those beautiful eyes, her smiles and giggles.

Layla had the capacity to communicate and express her joy, her fears, and her love without reservation and, she invited and encouraged us to do the same.

For many of us she continues to do so in uniquely personal ways.

Layla lifted the souls of all who knew her.  Layla taught us to reflect and question more deeply, to empathise and to love more deeply, and to cherish every opportunity to do so, without fear.

This is Layla’s legacy and one that few will achieve in a life measured in decades. This is how Layla fills our void and soothes our hearts.

Layla, you touched so many and are so loved. We miss you dearly and feel so very blessed to have known you.  We thank you Layla for your grace and love, you will remain in hearts forever.

 

 

To Ghaith, Costa, Pan and YiaYia Yota

 We would like to thank you for welcoming us into your home. Our coffee cups were never empty, you learned all our favourite drinks and personally supported me in the believe that lashings of butter on anything is perfectly acceptable.   On behalf of the whole team thank you for allowing us to be part of your family and for enveloping us with Love.

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Kathryn Chalker introduces Fiona Foster

We could say that the two stars named after Layla are symbolic. The first one of the nurses and carers. The second one was a tribute by the Daley family, friends of the family through Community Day Care. The second star represents how the deep and caring love of friends and community became a force of action to help Layla and her family.

Fiona Foster and her family, Dan, Max and Liv, were at the avant-garde of that and gave of themselves ‘endlessnessly’ - to offer help and asylum.

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Fiona Foster

How do we start? How do we try and fathom this inexplicable loss?

 

How do we talk about the immense impact that Layla has had on our lives and will continue to have. Honestly, I don’t believe any of our lives will ever be the same.

 

Layla has changed us. Fundamentally.

 

She gave us hope, connection and joy.

 

She taught us love in the face of such adversity.

 

All you had to do was look into those beautiful eyes and time stood still. Holding her felt like an act of God.

 

I remember speaking with Costa while they were still in Canada, telling him I couldn’t wait for a cuddle, and she didn’t disappoint. She snuggled in a way that tugged every heart string.

 

I have this beautiful memory of watching Ghaith and Costa preparing Layla for a bath in a sterile hospital. They brought such warmth and affection to that moment, standing side by side like two pieces of a puzzle. The love and care you showed in every moment of Layla’s life, cushioned the experience of her medical requirements.

 

Layla was born into such love. Ghaith, Costa and Pan were and are fearless in the gathering of their pride. Their tenacious little lioness Layla was adored by all who met her.

 

Theirs is a family complete, despite the hardships. One that has endured across distance and illness, and serves to remind us all what it means to have the strength of family when everything feels beyond our control. And this to me was truly visible through the relationship between the little sisters.

 

I think all of us with siblings will know they can be a little bit annoying at times, but Layla and Pan were lucky to have a bond that touched both of their lives.

 

A magical moment in time that will always be part of Pan and for Layla, that beautiful unconditional love from her big sister will have given her a sense of home, normality, and belonging.

 

As their little family find their way forward now, we know that Layla will always be part of who they are and the joy she gave them, and all of us, will be a reminder that life may be fleeting but the purest of love endures.

 

Costa has asked me to thank 4Cs Transformative Learning for facilitating the first interdisciplinary meeting. They are also Costa’s employers and very good friends. They have gone to great lengths to support Costa when he needed to put his job on hold and go to Canada immediately, and they have kept Costa’s job during this time and have been a solid, generous and loving support for him.

 

I would also like to acknowledge some of the special people who were part of Layla’s team of carers. Layla’s early childhood educator Sue Olivich, created the most incredible experiences of curiosity and joy that Layla adored.

 

Her music therapist, Renee who also sang when Layla was being laid to rest. Nothing would have comforted Layla more than hearing her sing and play for her.

 

Emma Phelps, her massage therapist , who gave Layla beautiful experiences of positive touch that allowed her to feel comforted and at ease.

 

Louise and Lisa gave her the space to feel through extended and deep communicative engagement in Layla’s Craniosacral therapy.

 

I have also been asked to share some words from Patti who felt honoured to be part of Layla’s care team.  She says;

 

Layla was such a beautiful soul, I grew to know and love her, our energies intermingled during our sessions. I could feel her endless love for you all, she was truly a beautiful angel and I know we will meet again. Sending love to everyone on this special day to celebrate Layla.

 

Thank you Patti for those kind thoughts and for all of you here today that have come together to celebrate the little miracle of Layla.

 

Layla touched all who knew her.

 

She stayed with us as long as she could. The time we shared with her was momentous, beautiful and earth shatteringly challenging. I am so grateful for every second of her presence.

 

May we all continue to wrap Costa, Ghaith and Pan in our love and support as we feel the many blessings of having Layla in our lives.

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Costa Loucopoulos

‘There are no words’ is said a lot, but there actually are words. They’re guttural and they’re visceral and they come in fragmented sentences and their mumbles as the sun comes in through the side of a curtain… rudely bringing on another day. There are so many words, it’s a landscape you can lose yourself in if you let yourself, so we say, ‘there are no words’ in the hope that we don’t even touch how painful and difficult the terrain is. But Layla’s driving question, what we use to unite our forces for this fierce soul, was ‘how can we improve Layla’s quality of life and enable her voice’.

 

So I have to speak for her today because it’s about coming home, taking what she came here to get.

 

When both Alberta Children’s Hospital and Sydney Children’s Hospital very kindly said ‘please advocate for your daughter’, we thought that that was an interesting word, "advocate", and we thought, we’re all advocating for Layla, aren’t we? So out of respect to you and because you’ve saved our daughter's life, can we offer our hand in co-creation?

 

And they accepted, and together we made Layla‘s life better, and each person came up with amazing ideas and their own treatments in philosophies and suggestions, and sometimes captain calls when we had to face some pretty ugly truths. But we were brought together by Layla.

 

I want to thank my Mum. You saw her feeding Layla on the video. She fed her with a sense of agency. She never fed her in a way that forced her to eat, and we were adamant that Layla would not have a tube down her throat and food poured into her body. Layla learned how to eat and Layla did it in Layla’s way and YiaYia’s way and together over two hours, three, they would eat half a cup of food, whilst we worried about whether or not she’d aspirated, but she tasted food. She loved apricot and chicken, and she loved the smell of mint, and she got such depth of quality of life, and Mum was given such purpose and rewarded for being such a phenomenal person and mother, again.

 

I got to see my partner, Ghaith, be a hero again, three months in NICU in Canada. Towards the end, I had to bring Pan home, trauma, etc. Ghaith stayed, the snows were Canadian! Sara wore a singlet and shorts today. Sara is here from Canada and is Layla's surrogate Mum, our closest friend, our sister.

 

He went to that hospital every day, and he stood at every meeting with every doctor, and he certainly became a voice for Layla. He brought her home and took a stand for her, otherwise she may not have even come home, and she came home, and we looked after her and he played the role of the father and a doctor at the same time, something I don’t envy.

 

I’m deeply proud of you, always have been, but you keep amazing me. I love you. Pan or Panayiota when she’s in trouble, was very courageous. She came to the hospital every day. She said hello to everyone and you might notice in the program, Layla has a whole lot of beads underneath her in a photo. They’re her beads of courage from NICU. Each bead represents a procedure that she had to go through in those first few months. I don’t like calling them the Beads of Courage, because words are important. Because courage suggest you were given a choice, and you chose courage. She had no choice, she had to do it. So she is a hero and she is fierce, much like my other little lioness in our pride, it’s our thing.

 

There are things that you inherit from your children. Go figure. That we wanted a family, a bigger family, and as we tried to make everything work towards the end, we realised that we needed help. We needed asylum in Sydney and the Hanouns came and saved us every time, and when we found Layla in the early hours of the morning. They provided asylum for our daughter. There were so many moments where they saved us. Sara’s sister, Stacey, and her husband, Brady; and Shelby and Ella and Mason, their children - they were our asylum in Canada. They would come to NICU and save us.

But the photo that you see, I like, because it’s honest. Can you see the hands. This is Kirky and Sara and you know Pan, you will meet Nora and you will meet Knox and there’s me and Ghaith at the bottom of Alberta Children’s Hospital taking a photograph on the last day before I returned to Sydney with Pan. 

 

And when they take photos, you think this will be lovely and you smile and and then you look at it two months later and you think ‘Oh my God, it’s my inheritance, it’s my gift’. It’s our gift.

 

We wanted to give Layla quality of life and a voice and that little trickster ended up doing it to us. She gave us Sara. How much more altruistic can you get than a human being who offers you all they can and opens their life and family to you? How lucky are we to have had Layla and to receive her inheritance?

 

Ghaith and I are deeply privileged. We’re deeply privileged that you’re here as well, and we thank you very much for coming.

A montage of Layla by Paul Warren

Paul Warren is a good loving friend of Layla and her family.  He was collecting  video clips for a possible  documentary about Layla and her incredible life.  Layla has changed things suddenly in the way she always did, and some of those images and clips have now been used to honour her today.

Paul provides this generous gift as a powerful way of enabling Layla’s presence here today.

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