Updated: May 13
Surreal, it’s the only word I can use to describe the opening of our very own Jolly Josh centre! Today the charity has reached a gigantic milestone, that once was an unrealistic, unachievable dream.
For those that have followed and read my previous blogs, ‘HOPE’ features greatly in most. Today firstly demonstrates that we should never give up on hope, nor should we give up on our vision, our passion, our drive.
‘Inclusion’ is defined as ‘the practise or policy of providing equal access to opportunities and resources for people who might be otherwise excluded or marginalised, such as those who have a physical disability or mental disability… The action or state of including or being included within a group…’
The word ‘Inclusion’ is often used, but true inclusion for families with disabled children did not exist in our Borough until now. Today marks a historic day for our families, a day when the word ‘inclusion; is used accurately, when the ‘D’ in ‘SEND’ is represented.
I recently heard it said that ‘opportunity dances with those that are already on the dance floor.’ Until now that ‘dance floor’ with regards to our Borough has NOT been accessible to our families but I am incredibly honoured to state that this is no longer the case as we open the Jolly Josh Centre! In doing so, we open the door to opportunities for our families to begin to Connect, Support and Thrive and to create a community. Together, we can become stronger, our voices can be heard louder as we aim to improve the quality of life for families with disabled children and/or those with complex medical needs.
Our centre, unlike any other in the Borough hosts specialist equipment and resources to meet the needs of our families, to provide fully inclusive access, comfort and furthermore dignity. Jolly Josh proudly houses Rochdale’s second (only) Changing Place (ahead of the new allocated government funding which has recently been assigned to councils). This facility is vital, without access to a toileting facility, it’s no wonder that our families were previously isolated… Until now!
In Founding Jolly Josh, it’s been a long and very difficult journey for me personally, I opened the sessions exactly one month after my son Joshua passed away, aged 15 months. We’d had a turbulent year, though born seemingly healthy and meeting all milestones, aged 8 months old a brain scan showed that Joshua had experienced extensive damage, meaning he would be severely disabled. This is believed to be due to a metabolic condition called Mitochondrial Disorder (as highlighted in recent years on Coronation Street). My beloved Nan passed without warning only a few months later, I believe she went to care for Joshua for me.
Initially, Jolly Josh began because I intended to ‘plug the gap’ in our Borough and stubbornly prove that the group was required. During Joshua’s Journey, we received the most amazing care and support from Derian House Children’s Hospice, but this was in Chorley, I needed a local support group, yet there wasn’t one. There was a huge gap in services within our Borough for those with children with disability/complex medical need, so I decided to fill it and Jolly Josh opened with thanks to those who gave their support.
We had the pleasure of showing 'Jannah and Musa Signs' our new centre, as exsisting 'service users' it was an emotional tour!
Jolly Josh soon became a distraction for me, a way of attempting to avoid my grief, I kept myself buried under a lengthy ‘to do’ list and struggled to permit myself time to grief. Unfortunately, though needed at the time, in hindsight this was not of any benefit and would only serve to hinder my grieving process.
Simultaneously whilst running the sessions, in 2018, after my ‘bereavement year’ I returned to my teaching career, now transferring to Springside School (special education) to teach children with Profound and Multiple Learning Disabilities (PMLD). My eyes were opened, I gained an insight into what the future may have held had Joshua had survived. I continued learning, seeking research and the best support for our children with PMLD. My colleagues became my friends and teachers, I observed the specialist love and care that they gave, and I developed both personally and professionally with thanks to them!
No learning journey is ever complete, hence why Jolly Josh will continue to strive to meet the best practise for our families, learning and developing together, to enhance quality of life.
With regards to raising a child with social/complex needs, I encourage you to read the beautiful, perfectly worded poem ‘Welcome to Holland’.
‘But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. ‘
c1987 by Emily Perl Kingsley.
In addition to peer support, it was important to me that Jolly Josh enabled families to meet professionals out of clinic, in an environment in which was less informal. Towards the end of his life Joshua had 23+ independent NHS professionals in his life, supporting his journey. I felt it beneficial that our families were introduced to such professionals, even if they did not require their support yet, because it may be that in the future they do and having met at Jolly Josh, a familiar face and prior meeting, may make a visit to clinic more emotionally manageable. So, I invited professionals/services/charities to join the sessions and created timetables for their visits, which proved to be very popular for both our families and the visiting professionals.
Theo came back to visit us and especially loved the Magic Carpet and our friendly mascot! (Left Photograph)
We had the pleasure of welcoming Heidi and her family, Sarah (Heidi's Mum) is the Founder of Peeps-HIE Charity! (Middle Photograph) We also welcomed our friends Eliza and Lorenza from 'Eliza Says' (BSL classes & App). (Right Photograph)
In 2019 Jolly Josh celebrated its 2nd Anniversary, I’d recently become a mother to our third child, our son Oliver (who was almost 3 months old, born 7 weeks premature) and life was such a juggle. Our biggest fear was that time would repeat itself, and that Oliver would share his brother Joshua’s diagnosis, although we were blessed with his birth, we were in a horrible state of limbo. (Thankfully Oliver is now 3, he’s a healthy boy and full of character)
At the end of our anniversary fundraising event, I was approached by Pete and Dan, strangers to me at the time. They weren’t ‘suited and booted’, nor were they wearing hero capes, which I now feel they should have been... Although knowing them now, I now imagine it would have been more in the style of ‘Only Fools And Horses’ if they had have been wearing hero outfits 😉 Pete and Dan asked about the need for fundraising for Jolly Josh, a question which wasn’t out of the ordinary. I spoke about needing cheaper storage and that the dream would be to gain a van to enable me to transfer all the equipment in one transition to and from sessions. A little deeper into the conversation and they asked about my dreams for the charity, the ‘what ifs,’ if fundraising on a greater scale was an option. I described the sincere hopes of having Rochdale’s 2nd Changing Place facility, a local hydrotherapy pool, a room with specialist seating equipment and a hoisting system, etc… The conversation finished, primarily because Oliver was desperate for me to feed him, Pete and Dan summarised in stating they’d like to consider supporting Jolly Josh, and generously offered us a free storage unit, which was a great achievement for charity!
To my surprise, Pete and Dan then made contact three days later, they wanted to meet. They suggested that myself and some of the trustees went with them to look at potential venues from which we may be able to run sessions, one of the venues which we visited was a mill owned by Pete which housed a Go Kart track. Baffled by the amount of oil, dirt and tyres which surrounded us, I was unsure as to whether this was a serious plan. Pete and Dan spoke about how they’d support us moving forwards to turn this venue into the Jolly Josh centre, our ‘place to call home’, the dream! I remember Anna, Janine (nurses & trustees) and I hugging and crying happy tears in the carpark afterwards, bewildered by what had just been offered to our charity and the doors of opportunities which this would open for our families.
The real hard work started here! My husband James is an Architect and he volunteered to lead the transformation, he and Dan took on the ‘Project Management’ of the construction. Within a matter of days, building materials began to arrive at the site, I’m not sure that I believed it all to be real until this point. Dan and Pete really didn’t waste and time! Additionally, their family, friends and contacts all stepped forward to support Jolly Josh, we were eloped by a huge team of new supporters, fundraisers, volunteers, services, business, etc, and the dream began to develop further, the construction became a reality. You can see a video collage of the construction process here.
I won’t bore you with all the details of the construction, but let me assure you, it’s been incredibly difficult! We all work in full time employment, we all have young children, we have spent every evening, every weekend, holidays, and endless hours working towards the Jolly Josh centre. For me, it has been an absolute roller coaster ride which I often describe as a love-hate relationship with the charity due to the personal difficulties of juggling five years of grief and endless voluntary work. It’s a misconception that I work for Jolly Josh, I actually have a full-time role at the local special school. I have no doubt that within the walls of the Jolly Josh centre you’ll find our ‘blood, sweat and tears,’ personally it truly has been testing for me and for those who’ve had to watch my struggle. Thank you to those who have understood that due to the relentless hours which I give to Jolly Josh it can take me days, if not weeks to reply to a simple WhatsApp, phone call, or text; to those who have understood that I’ve had very little time for myself and my family, let alone anything else and yet they’ve not held this against me, and not begrudged my lack of contact. Jolly Josh has succeeded at a huge personal cost to me, I gave up my career as a teacher to permit me to juggle the voluntarily role of managing the charity, instead of rising through the hierarchy of my workplace I have stepped down it, meaning a reduction in salary too. My thanks and appreciation therefore focus’ on my husband James, who has not only been my rock throughout ‘Joshua’s Journey’ and our grieving process, but he has also been at the forefront of the construction of the centre and has financially supported our family to allow us to make the charity the success that it has become today.
I believe it’s often been thought that I needed Jolly Josh as a legacy for Joshua, I can understand this, it’s an incredible legacy to have in his memory but that’s not the case. Joshua’s name would have been spoke of every day without the centre, his legacy would have lived on in our family and in our hearts, like most bereaved families. During seasonal grief when it becomes apparent that most have ‘moved on’ and few remember, I’d have continued to write my blogs and remind those who chose to hear me about our very special little boy. The centre was in fact constructed because it was the right thing to do (even though it may have not been right for me personally and our family at times), the centre was constructed because it was needed, the gap was evident and we were honoured to have been given the opportunity to make a positive impact, we continued even in the most difficult of times because trust, finance, faith and hope had been placed upon us, as giving up was not an option!
I look forward to the time when I can return home from work and not have to switch my Jolly Josh laptop on every evening and weekend, when I am granted time for self-care and social meets, when I can spend time with my family without sneakily trying to use the time to plough through Jolly Josh related emails and ‘to do’ lists. I look forward to a time when my family and friends have the best version of me, when I have the time and energy to be a better Mummy, a better wife, daughter, etc and friend. Witnessing the transformation of ‘our place to call home’ has been incredible and I know the future of the charity will make such positive change for families like ours. With regards to me and my family now, I hope that the future brings some form of work-life balance, for it is very much needed!
I couldn’t consider a funeral for Joshua, we didn’t have one, the day was simple with just James and I present. Denial meant that I refused to accept his death, I refused reality, I refused to grieve. Today was therefore not just the Jolly Josh Open Day, it was a remarkable celebration of Joshua’s life, a special, memorable day for our brave boy.
Heartbreakingly Pete isn’t here today to see the finished venue, ‘the place to call home’ which he generously gifted to our charity, he passed away in October 2021, mid-way though construction. Dan had always played an incredibly active role in managing the build and supporting Jolly Josh, but that then escalated immensely, he has worked tirelessly towards finishing the build now in Pete’s memory. Pete and Dan, their family, friends and their contacts have not only financially supported Jolly Josh, but they have worked behind the scenes determinedly to aid the charity to develop in line with the new centre which now also becomes Pete’s lasting legacy. I can’t express the gratitude that I feel, there simply aren’t the words, instead I hope that as they witness the charity grow and develop, housed in its ‘place to call home, that they will feel proud in knowing they were/are fundamental in making such a positive impact for our families and our community. As we open the Jolly Josh centre, in line with what would have been Pete’s 50th birthday and Joshua’s 6th birthday, I think the best gift that we can give is to begin to demonstrate what this centre means for our newfound Jolly Josh community and to begin to highlight the opportunities that they have created. In being Jolly Josh sponsors, Pete, and Dan, did not just make donations, they have made a difference!
Finally, to the families I have met along this journey, dreaming of inclusion for their disabled child/children, to those parent-carers who ‘flew to Holland instead of Italy’, to those parent-carers who nurse and provide medical support for their children, to those parent-carers who know the heartache of regular hospital admissions, to those parent-carers who are possibly facing child bereavement and those who are already grieving. The Jolly Josh centre is for you!
We look forward to welcoming you!
Joshua’s Mummy, Founder of Jolly Josh
Photo credits to Julianne Noon Photography and our families.
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