Introducing Our 'Pot Of Gold'

This photograph shows the extremely, emotional embrace after the birth of our 4th child, a child whom, we (James and I) thought had been born sleeping. Apparently, it’s common for a baby to be born with the cord wrapped tightly around his/her neck, our baby did not cry upon delivery, the midwives speedily took him (within the same room) to provide the assistance he required to inflate his lungs. My husband and I were broken, having experienced child bereavement already, we know the pain that child loss brings, the utter heartbreak that lasts a lifetime. We were in total despair, crying, screaming, begging for a miracle… I cannot put into words the absolute relief we felt upon being told that our baby had started to cry, unfortunately, I hadn’t heard it over my own sounds of sorrow. Hearing his cries, I smiled and uncontrollably sobbed, which lasted for some significant time afterwards. This photograph portrays me, a mother, meeting her son for the first time, which is an emotional event by any standards, but with the added suffering of child bereavement, in addition to the horrendous trauma of the thought of having to grieve another child… This photograph shows my ‘ugly crying face,’ but I’m so pleased that James somehow managed to capture this moment, an image that reveals so many emotions, the main being love!

Introducing William James Kelly, our 5th pregnancy, our 4th child, our 3rd son. Our ‘Pot of Gold’, the phrase which refers to a baby born after a ‘Rainbow Baby’.

Deciding to expand our family was not a decision that we took lightly again, knowing that the symptomatic diagnosis which stole our first son Joshua was genetic/metabolic. All genetic research from Joshua’s biopsies have been so far returned as ‘inconclusive’ and so we decided that we would expand our family once more.

Photo above: Sophie, Oliver & William, 2022

Sophie, our ‘Sunshine Baby’ recently turned 8 years old, she’s my strength and saviour, she has most certainly brought an incredible amount of light to the darkest of times over the years, she really is our Sophie Sunshine!

With Joshua, our ‘Angel Baby’, I experienced a perfect pregnancy and a beautiful home birth. We were spoilt with 4-5 magical months of him being healthy and meeting all milestones. He then devastatingly began to show signs for concern and real regression, it was then confirmed that he’d experienced extensive brain damage, now thought to be Mitochondrial Disorder. Our beautiful, brave boy passed away aged 15 months, life as we knew it changed and we became bereaved parents, against our will, if only love could have saved Joshua, he’d have definitely survived!

With regards to Oliver’s pregnancy (Oliver recently tuned 3 years old) and early years, he is our ‘Rainbow Baby,’ I was incredibly nervous and extremely anxious as to be expected. For us, there is no test which can establish whether our children have the disorder and so we must endure a horrendous ‘waiting period’, watching and observing how our children develop, and more so how they cope with illnesses such as regular virus’. Do they recover as they should, or does the body go into ‘metabolic shut down?’ Oliver, was a very sickly baby due to his prematurity he had reflux and colic, this preyed on my mind, was it a symptom of gut failure, as Joshua experienced? Thankfully not! But with such experiences, situations and past traumas all served to feed into my inner anxieties. Our first hospital trip with Oliver was awful, it brought back so many haunting memories of previous visits with his brother, and such challenges have repeatedly reared. Immunisations became a dilemma, usually we would not question whether or not to immunise our children, however Joshua’s immunisations we’re the trigger to his disorder, his body did not cope, and he regressed swiftly after having had his vaccines. James and I both believe in the importance of vaccinations; this wasn’t a debate. However, we knew we’d cause any underlying issues to trigger if we were to allow Oliver to have them. It was an agonising dilemma, to protect Oliver, or to trigger a life limiting disease. We spoke with many specialists; the advice was to immunise as normal but that of course it was our decision. We decided that we would immunise but that we would do so on an individual basis, extending the process, allowing Oliver’s body a better chance to cope with each. Our views were not shared by all, some professionals lacked sympathy and understanding, at points we were belittled (I feel this was mostly due to the lack of knowledge some had with regards to Mito) but thankfully most understood our primary need, to try to ensure that we could protect Oliver. It was a very upsetting and apprehensive process, which caused lots of anxiety and tears but thankfully Oliver coped well with each immunisation.

A Rainbow Baby is said to bring a rainbow of hope/light, after a storm, I do not believe this, we’ll forever be ‘in the storm’ of grief-there is no ‘after.’ Having Oliver did not mean that we were simply able to move on to ‘a happy ever after ending’. Instead, Oliver brought hope and light within our storm, further reasons to smile and have gratitude, to be grateful for the gifts he and his sister bring, such as love, strength, resilience, laughter, etc.

Photo above: William James, 2022

My pregnancy with William had been a little different. (We feel it will be my last which selfishly saddens me but I am under no illusion as to how very fortunate we are!) With William’s pregnancy, I felt that we were almost challenging ‘karma and fate’. It’s difficult to explain but I had felt like we may have ‘pushed the boundaries too much,’ that we have been beyond lucky to have been given a healthy baby following Joshua’s diagnosis, and though gender is of no importance to us, only health matters; the fact that we had been blessed with a healthy second son (Oliver) felt even more emotional (though this also carried its challenges). I no longer believe in Karma or fate (experiencing child loss made me question this, I have not sinned so drastically that I deserved child loss, nor does my fate decide that I should experience the pain of child bereavement) but throughout William’s pregnancy I felt that our decision to expand our family may been viewed as selfish, that ‘the universe’ may resent this and worryingly deliver the unimaginable consequence, the repetition of child loss. The anxiety remained throughout, it will no doubt continue to remain, however, I endeavoured to enjoy my pregnancy, and I plan to continue to enjoy being Mummy to William, soaking up every moment of motherhood, with the aim to push such fears into the shadows.

Photo above: Joshua and Sophie, 2016, by 'Olivia Whittaker Photography'

The loss of Josua will never be replaced, no matter how many children we now have, or how many sons we now have, Joshua will always be a missing piece of our jigsaw, our family. Some will have misconceptions that child loss can be ‘healed’ by having more children, but Joshua will never be replaced, the gap, the hole will forever be deep, in our past, our present and our future. We move forwards with Joshua in our hearts, we say his name daily, we teach our children about their absent brother, but we do NOT ‘move on’

I feel so very lucky, which seems a little bizarre after all we’ve been through! I am so grateful to have 4 children. How can it be that after the cruelty we have endured I still feel lucky? Yet this gratitude balances alongside the darkest of grief, it’s an odd feeling to have such mixed emotions which battle daily, thankfully I’ve managed well over the years to keep them balanced, I hope this continues.

Photo above: Introducing William James, 2022

William, you complete our family, you are our ‘Pot of Gold’ baby, the treasured gold where the rainbow meets land, and I will go to the ends of the earth to protect you, just as I will for your sister and brothers. You are far more precious than gold, to us you are our everything! My biggest wish for you is health and happiness. Xx


Founder and Trustee of Jolly Josh

Photography by 'Little Creations Photograpy', capturing William James aged 6 days, 2022.

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