Eight years ago, today our beautiful boy, Joshua James was born. After a blissful pregnancy and a peaceful home birth, our hearts were full. On this day, our little girl (almost aged 3) met her baby brother for the first time, and as of that moment an immense bond was created. Sophie couldn’t leave Joshua alone; she was obsessed with him, and he was in awe of her! Sophie rarely left his side.
Our lives took a devastating turn when our once healthy baby, who had been meeting all milestones, began to regress; and aged 8 months old Joshua was diagnosed with ‘extensive brain damage to all of his white matter,’ meaning he would be severely disabled. Months later, just days after his 1st birthday, we were told that our brave boy had only weeks, if months, to live. Sophie visited the hospital daily as/when we were admitted, and later, we all moved into our beloved Derian children’s hospice, she referred to it as ‘The Holiday Home.’ Joshua passed away aged 15 months old, in August 2017. I believe Joshua walks beside his sister every day still, not even death could break their connection.
Present day, 8 years on, James and I mark Joshua’s heavenly birthday by attending Buckingham Palace to receive the King’s Award on behalf of Jolly Josh. Could the date be more meaningful? Joshua passed away in London, and today we return here on his 8th heavenly birthday to gain acknowledgement for the voluntary work completed via the charity founded in his memory.
Though James and I are in attendance, this award is for every single person who has supported us in creating and developing the charity and the centre, in particular our family and friends, and the incredibly generous individuals, businesses and families who sponsored the build of ‘our place to call home.’
In all honesty, my journey with Jolly Josh has been much like my journey with grief, a love-hate relationship. I spent five years working voluntary alongside my full-time job, Jolly Josh opened one month after Joshua’s passing and I put all my energy into establishing the group, I realise that this was now a distraction strategy to run from my grief. The hours were long and challenging and many years later I would come to realise that my ‘obsession’ in making Jolly Josh a success was actually a hindrance to my own well-being. I was reaching burn-out, who wouldn’t? Hence, I took a step back from teaching to manage my workload and thankfully enjoyed a formal maternity leave once William (our 4th child) was born, which synchronised with the grand opening of the Jolly Josh centre.
Since then, I haven’t returned to the Jolly Josh ‘front line,’ instead we have wonderful team of support around us who manage the charity, our Trustees and a team of staff at the centre. Admittedly, at first, I found this incredibly difficult. I had manged every element of Jolly Josh, I had been volunteering fulltime hours on a weekly basis. Suddenly I acquired time, and lots of it, of course it was easy to fill thanks to my children, they benefited greatly as did I! Now, the centre has been open for two years and I often hear people talking about Jolly Josh, unknowingly aware that it was my dream. I listen, smiling with pride, then tell them that Joshua is my son. He left a lifechanging legacy! I ‘banged my drum’ loud, I told my ‘sob story’ in the hope that we could make a positive impact; so, this award goes to those who heard and gave more momentum, those who supported our cause and made the difference!
This award also belongs to our families, they bravely reach out to Jolly Josh for support, and we grow the charity together, working to meet their needs. Many of our families volunteer to support Jolly Josh, we are grateful that we have been able to create a much-needed community and create networks which were once impossible because settings were not accessible. Our moto is Connect, Support, Thrive and we achieve that daily in a multitude of ways, with thanks to our families! I once heard that opportunity comes to those on the dance floor, but prior Jolly Josh, our families couldn’t access the dance floor, nor the opportunities, now the prospects are endless.
Today, I wear an 8th birthday brooch to mark Joshua’s birthday, I have accepted that the day is going to be extremely emotional, a bitter-sweet day, experiencing pride at the achievements made in my son’s memory combined with the grief that we’re not waking to an excited 8-year-old boy who’s eager to open his presents. The pain of child bereavement will haunt us forever, we live with trauma every day. I have no doubt that Sophie has been our strength and saviour during our grief journey, and so I’d like to credit her with this award. In her own right she has volunteered for Jolly Josh since the very moment I decided to create the group. She sat beside me as I planned the timetables, she came to meetings, came to the sessions, was made to trail charity shops for resources, came to the storage unit regularly, the list is endless. Over the years, James and I have sacrificed huge amounts of time and energy to Jolly Josh, that should have been directed towards Sophie, yet she never complained when Mummy and Daddy were working nights, weekends, holidays, or when she visited the construction of the centre throughout the build. She never complained all the times we were on the phone, or sending emails and hushed her with ‘In a minute.’ Sophie knew of the purpose of Jolly Josh from a young age, she understood that it was created to help families like ours. Jolly Josh will forever be one of my proudest achievements, but it doesn’t compare with the pride that I feel for Sophie! She has navigated and managed her grief journey so openly and continues to do so. She is incredibly wise for her years. Sophie cares about people and wears her heart on her sleeve. She asks questions and appreciates our honest answers, she has also taught us so much too. I hope that one day Sophie will truly understand how much she is loved (along with her brothers, Joshua, Oliver and William) and how she brought and still brings light to our lives in the darkest of days, our Sophie Sunshine… This award is for you!
Carole/Mummy xxx
