Edison

On the 24th of January this year, I photographed Nancy & Charlie’s wedding. To call their day of celebration a wedding,  just wouldn’t do it justice. I’d describe it as more of a wedstival. It was an incredible day. A day where love was in action everywhere you looked. Everyone was pitching in, getting involved and truly celebrating the union of Nancy & Charlie.

On the wedding day, Nancy was about 7 weeks shy of giving birth. The baby in her belly was already oh so very loved. The baby was included and remembered at every turn during the day. It was beautiful to witness.

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Last Wednesday, I received a call to say that Nancy & Charlie’s baby boy, Edison, wasn’t doing so well and they asked if I could make the drive up to Royal Randwick Women’s Hospital as they were going to have to say goodbye.

I got up there as quickly as I could and documented some of the family coming to visit. I started simply taking still images, but quickly realised that I’d need to quickly work out how to film (video) the moments that were unfolding in front of me. The words that people were saying were just too powerful not to be recorded in some way.

Thank you to RDFL for editing the images for me the same evening, Maxim Drygin who kindly edited the video footage for me, and to Vision Art who wanted to bless Nancy & Charlie with a fine art album. Everyone pitched in to do their bit, completely free of charge. I asked that any payment that was to be made to me, instead be given to the Royal Women’s Hospital that did such an amazing job. Please consider donating here – https://www.tilt.com/tilts/in-honour-of-edison-charles-mclean

Unfortunately baby Edison passed away 2 days later.

I am honoured to have been involved in creating this celebration of Edison. Please be sure to read all the way to the end of this post to read what Nancy & Charlie wanted to say about their beloved Edison.

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A tribute to Edison – by Nancy & Charlie.

“Our beautiful baby boy Edison, our first born, was diagnosed with an extremely rare metabolic condition (non-ketotic hyperglycinaemia) on Day 3 of his short life. At 7:30pm on Day 5, the ventilator, which had been breathing for him, was turned off and we said goodbye.

But our little fighter had other ideas. He resumed breathing for himself and gave us two more beautiful days where we were blessed enough to take him for a picnic at the beach and even bring him back home again for 24hrs of cuddle time in our own bed. Our angel left our world at 10:25pm on Day 7; three hours short of being a week old.

It is hard to find the positives in losing your child, but Edison has taught us a beautiful lesson that we need to share. Cherish every moment you have with your loved ones. Love them like this is the last moment you will ever have with them. Never wait.

We only had seven days with our baby boy, but we take immense comfort out of the truth that in those seven days he knew only love.

We spent those days laughing as much as possible. We made a promise to each other and to Edison to celebrate his life, not to waste any second we had with our baby boy while we still had him with us. Each time one of us started to become overcome with grief we reminded ourselves that little Eddy was still with us and to cherish the time we had with him. To look at our little angel and kiss his little button nose whilst we could, to smother him with cuddles whilst he was still with us. To be thankful for the present moment we can spend with him and not fearful of future ones without him. All he knew was love, and kiss attacks.

Our love for each other has been the light in the darkest moments. No-one should ever have to say goodbye to their child, it is the cruellest demand on a parent, but our love for each other has given us the ladder to climb back up into the sunshine. Edison gave us three days after the diagnosis to say goodbye on his terms, in our arms, in our spaces and the climb up that ladder was able to begin. One day we’ll reach the top, but we’ll never forget our angel.

There are no words to describe the inconceivable loss of losing our baby, but we’re deeply thankful to everyone who has used what words they can to console us and our family in this impossible time. The cry of deep sorrow seems to have awakened the lost art of kindness in strangers. We have been overwhelmed by the sheer outpouring of deeply reflective messages of sympathy, of sadness, and of promise of an easier time of come. I must admit the kindness was unexpected, which is sad of itself and has taught me that it is possible to surround myself with like-hearted people; people who want to help each other through the incredible moments, such as the birth of a child, as well as the painful days. Never stop being kind. You are making a difference.

We want to thank the amazing team of midwives, doctors, nurses and care providers at the Royal Women’s Hospital who treated our boy with such love and respect. Over the short time we spent in their care this amazing group of individuals earned a place in our hearts forever; their dedication, kindness and support helped us through the darkest days of our lives. Without them we wouldn’t be able to look back at the beautiful moments we shared with our boy with the love and happiness that we do. We were lost in a fog, the only thing in focus was our son and each other and the moment we were in. Somehow ‘Team Royal’ managed to keep us insulated and able to stay focussed on our son and each other, and yet informed and prepared to take each next difficult step as it arose.

If you would like to help Edison and his family make some good out of this tragedy, please help us raise money for other mums, dads & bubbas who need the help & support of ‘Team Royal’. We aim to donate to the midwifery group practice program that brought our boy into the world so naturally and peacefully and supported us with their amazing strength through this whole ordeal, and the Neonatal Intensive Care Unit who did everything possible to save our boy and once discovered his condition wasn’t treatable, arranged the most beautiful ways to spend the remaining moments with him.”

Donate here – https://www.tilt.com/tilts/in-honour-of-edison-charles-mclean