Today, 8th May 2019 we mark our beloved, brave Joshua’s 3rd birthday.
It breaks our hearts not to be celebrating as we should be, to only have the ‘what ifs’ of imagining what would have and should have been, to see our little boy opening his gifts on his special day, to holding a celebratory birthday party and to glimpsing at the hopes and wishes of all the things to come in his next year.
Joshua was born via a planned home birth May 8th 2016, we were overwhelmed with love. Joshua developed and thrived, he had a wonderful character, he was an extremely happy baby and he was his sister Sophie’s biggest fan!
Instead of celebrating his 3rd birthday as we should have, we held a small ‘memorial style’ family gathering at Joshua’s oak tree on the hill followed by food at our house. How is that so? For his 1st and only birthday (2017) we held a ‘ONEka’ themed party, those lucky enough to have a golden ticket came to help Josh to celebrate but also to support us in our time of need, giving gifts which would support the recent (January 2017) diagnosis of the onset of ‘extensive brain damage.’ Joshua thoroughly enjoyed the busy day, we felt blessed and very lucky to have our family and friends.
The following day we had an appointment with Josh’s consultant paediatrician, desperately seeking to reduce and stop Josh’s vomiting which had become extreme over previous weeks, his gut was failing and Josh was ‘failing to thrive.’
On the 12th May, four days after his 1st birthday we were once again admitted to #ManchesterChildrensHospital. Little did we know that this was to be for the last time. By this point Josh was entering another ‘metabolic dip,’ he was barely awake and was malnourished. His Nasal Gastrostomy feed then became controlled via a pump, he was given more IV fluids and it was planned that we would meet with an anesthetist to discuss whether or not Joshua was strong enough for theatre to undergo a muscle biopsy (amongst other investigations). Josh was placed on a concoction of genetic vitamins and that very day a meeting was pre planned for the Tuesday afternoon (16th May) with our consultant neurologist and consultant geneticists.
The meeting held on the 16th May 2017 crashed our world into a living nightmare! Life would never be the same. I remember shaking as I went into the meeting, my body had already gone into shock, aware that this was going to bring negative news but truly I had no idea of the severity and destruction that was to come. I had feared that the professionals were going to disclose that Josh’s extensive brain damage meant that the disabilities were more extreme than we had imagined. Your worst nightmare would never compare to that meeting, to be told that your precious, adored child has ‘only weeks, if months to live’ is soul destroying, there are no words to describe such an experience, ‘hell’ doesn’t even come close! Although I went into shock I can remember lots about that meeting and the moments thereafter, my #posttraumaticstress includes flashbacks of such. We were advised to gather our family that day to come and say ‘goodbye’ to Joshua, he was to go to theatre later that day, he was extremely weak and may not survive the anesthetic but we needed to find a diagnosis via biopsy (we still do not have a genetic diagnosis). In the darkest of times we were surrounded by our close family, difficult photographs were taken desperately trying to capture all memories of Josh even in such horrendous circumstances. A week earlier we had celebrated Josh’s 1st birthday with no knowledge that he would not see his 2nd. I was in denial, I was confused, I was broken and completely destroyed yet I had to be a Mummy, Josh and Sophie needed me.
The operation was cancelled and moved to the next day. Joshua defied all and showed enormous strength, incredibly he was discharged from the High Dependency Unit straight away and we were taken back on to the ward (to our room, where by now James and I were both living).
Later that afternoon we had another meeting in the therapy room with more of Joshua’s professionals, an opportunity for us to ask questions and discuss the facts which were presented to us the day before. It was confirmed to us that there was no treatment and no cure, we were to begin counselling and Joshua was to begin palliative care. Over the coming days we were visited by nurses from Derian House Children’s Hospice and transferred to hospice care on the 24th May.
Miraculously, on the 30th May we were supported by the Derian ‘at home team’ and the community team to bring Joshua home, he had battled once again and was ‘stable.’ We had a wedding to plan! Whilst staying at the hospital we had decided to bring our wedding forward.
This is a short account of ‘Joshua’s Journey’, May 2017. What should have been the start of Joshua’s 1st birthday celebrations was in fact the start of our living hell. We were to nurse our son through palliative care for the short time we had together, though I truly never accepted this due to denial. Every day since Josh passed is difficult; but May will forever be an extremely difficult month.
I feel that this year is actually somewhat more difficult than last year, if that’s possible? It’s almost as though there is a general expectation for bereaved parents/families to have ‘moved on’ after the 1st year. We will never move on, we only move forward carrying the grief, we have moved forward a year in time without Joshua physically here but he is most definitely always present in our hearts and minds.
Happy 3rd birthday Joshua James, we love you dearly xx