Today marks five whole years of missing our gorgeous Joshua, five years of wondering all the ‘what ifs’, five years of not being able to hold our son’s hand, kiss his lips and cuddle him. Five years of wondering ‘Why us?’ Five years of channelling every ounce of our grief into a charity which would make huge positive change for families like ours. But mainly five long years of heartbreak beyond measure, five difficult years of going to bed thinking of Joshua and waking up knowing that the pain of missing him will be felt again the very next day too.
I’m not entirely sure how five years have gone by, it seems so long ago now but in the same breath it feels like only yesterday too, a bizarre feeling. At the time of Joshua’s passing, I couldn’t consider a funeral for him, we didn’t have one. The day (September 6th 2017) was simple with just James and I present. Denial meant that I refused to accept his death, I refused reality, I refused to grieve. Therefore, the opening of the Jolly Josh centre was a remarkable celebration of Joshua’s life, a special, memorable day for our brave boy (and of course with gratitude to our sponsor Pete, who passed away mid-construction). Watching the charity flourish (whilst finally taking a break in the form of maternity leave) has been hugely rewarding. Knowing that families who have children with Complex Medical Needs and/or Profound and Multiple Learning Difficulties, and/or Physical Disabilities are beginning to access the centre which we specifically designed for them is very heart-warming, if not bittersweet. Had Joshua have survived, the centre would have been a second home for us, and we hope it becomes just that for our Jolly Josh families. We are so pleased that such families now have a ‘place to call home,’ where they feel safe, secure, and confident in the knowledge that they are at the heart of the everything the charity strives to develop and achieve.
When Joshua passed, my life changed in every aspect. With regards to my drive for Jolly Josh, my career switched to working in a Special Needs school, and in doing this 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. No learning journey is ever complete, hence why Jolly Josh will continue to aim to meet the best practise for our families, learning and developing together, to enhance quality of life for our families. We have succeeded in ‘plugging the huge gap’ in services within (and surrounding) our borough and I look forward to watching the charity grow to meet more of our family’s needs.
With regards to ‘meeting needs,’ my family are now finally trying to focus on our own needs. The past five years have 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. I have no doubt that within the walls of the Jolly Josh centre you’ll find our ‘blood, sweat and tears.’ The centre was 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, and giving up was not an option! What we’ve achieved is overwhelming, our dream and vision for the charity became reality, families like ours will feel included, valued, and now have their very own ‘place to call home.’
With regards to the challenges of raising a child with complex medical needs/PMLD, 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 relation to this poem, our journey didn’t only redirect its destination, our journey devastatingly came to an end, I wish more than anything that we could have ‘stayed in Holland’. Life would have been incredibly challenging, for that I have no doubt – I witness the daily battles that our families face. Yesterday I was reminded yet again that we’d have been constantly excluded from our community, from society, from living to the fullest. I took Sophie, Oliver, and William to meet James in Manchester; as I boarded the train with the double pram, I found myself wrestling to get it up the step of the train, panicking because the train door (which was the designated wheelchair entrance/exit) was so narrow that I barely had an inch either side (and that’s no exaggeration). There was no turning circle once I managed to fight my way onboard, I then had to remain in the ‘no man’s land’ of the carriage way. Thankfully I received help from other passengers to disembark. All could perhaps be forgiven if it was an old train, but it was an extremely modern train, thus highlighting the fact that society still fails to provide dignity for our disabled community.
Upon reflection of the past five years, I hold a high level of pride in founding Jolly Josh, in ‘working’ every night, weekend and holiday to ensure that the charity progressed. I am so proud of James and I, of our children and family for putting so much focus, time, and effort into Jolly Josh. I am incredibly thankful to those who have supported our journey on a personal level and those who have supported the construction of our Jolly Josh centre.
It’s only been a few months since I began my maternity leave (for the first time in five years I’ve switched my emails to ‘out of office,’ diverted my social media messages, been absent from Trustee meetings, etc) and in truth it’s been everything I needed and more! It’s been so refreshing. Time is a gift and I’m now able to spend that time with my loved ones, rather than working all things ‘Jolly Josh.’ Perhaps now, my grief journey really begins a new chapter? A chapter whereby I no longer run from grief, but I accept it, face it and learn to manage it… I’ve achieved more than I ever could have imagined with regards to Jolly Josh, with thanks to our supporters. With the help of James and my children (especially), my family and friends, I’ve miraculously made a positive impact in response to becoming a bereaved parent. I’ve no idea how. Someone once said to me ‘Well you wouldn’t have the charity if Joshua hadn’t have passed away.’ It’s no question as to which I’d choose, Joshua would still be here and the gap in services would still be present. The charity does not ‘replace’ my son, it does not compete with his presence, it’s simply a bittersweet ending to the devastation of child loss. If I were to rewind time, I’m not even entirely sure I’d choose to found Jolly Josh again, but it does give me some form of contentment to know that we have made a difference in establishing the charity and constructing our incredible centre.
As we enter our fifth year of grief, I look forward to spending my time on family, friends, and more importantly me – one day I will join a gym, attend a yoga/pilates session, return to counselling, etc… For now I’m busy, and for once I can say it’s not related to Jolly Josh, I’m happily busy being ‘Mummy.’
Carole x
