Every story needs an ending, and this is ours. We never expected a happy, Hollywood ending with Josh making a miraculous, full recovery and going on to play for Man United in the Champions League final, but we didn’t expect this either. We’d always imagined we’d enjoy Josh for so many more years to come. You always imagine you’ll outlive your children. For things to have changed so dramatically just 4 days before he came home was a terrible shock to everyone. The signs had been there but there were always other theories ranging from migraines to electrolyte imbalances. The human body is such a complicated piece of machinery, it’s impossible to know exactly what’s going on at any given time, and even if we had known what was coming it’s doubtful anyone could, would or should have done anything differently.
The hospital contacted Josh’s old school shortly after his death and before long word had spread across Bromley. We were livid at first as it meant people we barely knew found out before our families, but when we discovered it was done by one of the doctors on the ward for all the right reasons, that anger completely evaporated. We’d feared it was some ludicrous hospital policy and that someone from the hospital school was acting under protocol, but that wasn’t the case and we have no issues whatsoever with what happened or why.
Joseph carried on pretty much as normal at school during the weeks that followed. We felt he needed the routine and it appeared to help. His teachers told us they’d look after him and we never doubted it. He was literally welcomed into the playground with open arms as his classmates swarmed around him to give him great big hugs. It was like the scene in Close Encounters when Richard Dreyfuss is welcomed into the mothership by hoards of cute, ethereal little aliens, only even more emotional. If there had been a John Williams film score to accompany the moment, I would have been blubbering all the way home.
Claire and I threw ourselves into organising Josh’s funeral to keep ourselves occupied. Sadly we’re old hands at this now. Maybe we should take it up professionally.We contacted the same company who organised Alex’s funeral and were a little shocked by the woman who greeted us at first, but she turned out to be a complete star. The first thing she did after greeting us was tell us that we might not want to use them this time around as they charged a fee, whereas many other companies carry out children’s funerals for free. We then sat in her office for an hour as she phoned round several rival companies for quotes and to see what they included and even made appointments for us. In the end we wanted a horse drawn carriage for Josh as we couldn’t bear to see him in a hearse and she went to great lengths to ensure that her boss dropped the price enough for us to not even consider looking elsewhere – not that we would have done anyway. It was the right call as they were excellent from start to finish and the level of organisation on the day was astonishing – just as it had been for Alex.
On the Sunday after Josh passed away, I went to a football match. I only ever see a game every two years or so, when friends with season tickets have friends who can’t make games against Everton. Such was the case here, and I’d been down to go for a couple of months. Ironically my friend’s friend couldn’t make the game as she was sprinkling her father’s ashes that day. Walking to Fulham’s ground along the Thames path with the sun reflecting off the river was so beautiful, I felt alive again for the first time in many months although the sight of so many fathers walking to the ground with two sons in tow soon brought me back to earth. So many things Josh will never do. So many memories forever tainted by his absence. The match ended Fulham 1 Everton 3 and in between watching the goals fly in, we had a good old natter and it helped clarify a couple of important things I’d been unsure about regarding inviting people I knew that didn’t know Josh to the funeral. So many people got to know him so well through the blog that it only seemed right. Thanks Gillian. Thanks too to my friend Mieke in the Netherlands who helped inspire my speech at Josh’s service. I’ve attached what I said that day should anyone who couldn’t be there want to read it.
The next week after was half-term and it flew by as we tried to balance keeping Joseph occupied with finalising Josh’s funeral arrangements. Duncan, the Deacon we first met when we were organising Alex’s funeral, was able to preside over this one too which meant a great deal to us as both he and his wife became real family friends after that and were very close to Josh. We took Joseph to see Johnny English at the cinema one rainy afternoon. Every movie currently showing is one that Josh was desperate to see, so joy and sorrow are never very far apart in our lives. We took Joseph to Legoland last Friday with a friend and again, it felt so right and so wrong at the same time. Did we all enjoy ourselves, yes. Did it make us feel guilty ? You bet. We’re used to such strange emotions following Alex’s death but it doesn’t make it any easier to handle them I’m afraid. I put together a tribute picture for Josh that week too, which I managed to get printed online on a huge canvas and delivered the next day. It was used in church to keep us all focused on Josh during the service and features him aged 5, 7, 9, 10 and 12. It felt wrong to reduce him to a single image as so many people knew him from different stages in his life and he looked so different at every stage. This picture is also attached for you to see if you haven’t already and it’s the 12 year old Josh in the bottom left that we find ourselves grieving for most as that’s the boy we’ve just lost. We were grieving for the other Joshuas for a long time before he actually passed away.
We kept Josh dressed in his Phineas and Ferb pyjamas in the end. Another friend tracked down a pair on the internet for Joseph, which was such a lovely thought. We went to see Josh at the chapel of rest at the funeral parlour the day before his funeral. We were undecided whether Joseph should go or not, but left it up to him in the end and I think he made the right decision. He came. I saw Josh in the morning to check all was okay and returned in the afternoon after school with Claire, Joseph and Claire’s parents. I’d warned Joseph that Josh looked more like a waxwork of Josh than Josh himself as he was no longer there inside in his body. He’d been fascinated to hear how cold and hard his skin would feel but resisted the urge to rap it with his knuckles, even though he’d talked about it before we went. Josh looked at peace and we left several photographs and bits and pieces that he treasured in the coffin with him. Joseph sobbed and sobbed as we left but I think it gave him a closure that he wouldn’t have had otherwise, having last seen Josh playing football on the astroturf pitches at the back of Great Ormond Street just a month or so ago. He’s had no bad dreams since, apart from one about stepping off a boat and falling into a river full of man (or boy)- eating Saltwater crocodiles and I somehow don’t think that was related.
The funeral was more or less perfect, if that’s a word you can possibly use to describe a funeral. Even the sky, which was weeping earlier in the morning, cleared by the time we headed off to the church. The horse and carriage arrived outside the house on time carrying Josh. The two black horses were magnificent and the red plumage on their heads was chosen by Joseph who didn’t just opt for red because it was Man Utd’s colours, but because ‘red and black look really good together’. Ever the fashion guru. We placed a picture of Josh in the hearse with him and followed the carriage in a limo up the hill to St James’ church in Petts Wood. It took about 20 minutes which is far slower than Joseph can do it on his bike, but the car seemed to glide along as if it was floating on air and the clip, clippety clop of the hooves in front was hypnotic it all felt so unreal. There were so many people already at the church when we arrived and we greeted as many as we could before I was given the signal to take Josh’s coffin on our shoulders and begin the procession into the church. Joseph followed the priests in and led the way. His brother would have been so proud of him.
The service was everything we’d hoped it would be; led with warmth and authority by Father Bryan accompanied by beautiful singing from his wife and daughter-in-law and with a homily so glowing and personal from Deacon Duncan that we half expected to see our family commemorated in one of the church’s stain-glassed windows. Having also lost his brother at a young age he directed part of the homily directly to Joseph which made him feel very important, which of course he is. The readers all read perfectly and if too much emotion crept into their voices from time to time, that only served to make everything more fitting. My speech wasn’t easy to deliver, but seeing Claire smiling through her tears next to a beaming Joseph on the front row made it bearable, along with a mug of cold water that was mysteriously handed to me when I was threatening to dry up. Hopefully it was tap water rather than anything too Holy. We had time to spare before heading off for the crematorium but that soon disappeared as we went round the church and lost ourselves in the company of so many warm and wonderful faces from so many diverse aspects of all our lives. Everyone looked so sad that it had a beauty all of it’s own.There were so many people from my past I hadn’t expected to see there and that only made me weep even more. It was fantastic to see so many of the medical staff that Josh so adored from Great Ormond Street there alongside the local community nurses. I’ll get a big thank you out of the way now to everyone who queued to sign our Book of Remembrance and for your contributions to GOSH. We raised over £2,300 at the church alone and at least another £1,000 or so in donations through Dove’s. It’s enough to make a difference to the lives of future children on Fox ward.
Joseph finally crumbled as we walked back up the aisle following Joshie’s coffin and I had to carry him round the church as he sobbed and buried his snotty nose into my shoulder. He recovered quickly once we were back in the car and, despite setting off 15 minutes late and hitting major road works on route, the horses somehow managed to trot through the Crematorium gates bang on time. Joseph decided not to come to the chapel which was a very grown-up decision to make, and as usual proved to be the right one. It was a short ceremony but perfectly executed apart from the coffin being lowered contrary to our wishes. It always strikes me as odd that when all the prayers are of ascending to Heaven, the coffin should look as if it’s heading in the other direction. We departed to the strains of Israel Kamakawiwo’ole’s version of‘ Over the rainbow.’ Outside the sun was shining and the sky was blue as we all made our way to Alex’s garden in the grounds of the crematorium. We’d visited earlier in the week and it’s going to be very hard to think of it or accept it as Joshua and Alex’s garden - especially as he visited it so often when he was alive. At the memorial, Joseph read a beautiful poem that Claire had found about doves and was given a spontaneous round of applause before releasing a dove in Josh’s memory. Thankfully his love of deadly creatures didn’t take over and he resisted the urge to send a bird of prey from Eagle Heights off after it. As the dove flew off into the heavens, I couldn’t help but remember Josh doing the same for Alex and then asking if there was another one and if he could do it again. Everyone had smiled that day too. It feels so long ago now.
Back at the house, Claire busied herself organising food and drinks for everyone although there were so many people ready and willing to help, she was soon able to relax a little. Joseph got changed out of his suit as soon as he arrived home and was given an unlimited pass to play Playstation in the front room with two of Josh’s best friends. For the record he managed to thrash them both despite being half their age. We had the flowers brought back to the house and displayed them on the deck - better here than next to the car park at the crematorium which is where they usually remain. A beautiful rainbow appeared in the sky over our home that afternoon, which seems particularly apt given the song we played at the service. Hopefully Josh got an even better view of it than we did, up there in Heaven.
And so our story ends. I’m writing this lying in bed as my back has locked after so many months of stress and carrying heavy loads, including Joseph in church. I can just about walk but have to go up and down stairs on my hands and knees, just like Joshie used to do when he was last at home and the steroids had left his muscles so weak. It seems apt somehow. This is my last chance to say a big thank you to all of you for being such a support to us. Please don’t stop now, we need you more than ever. We have had so many wonderful cards from friends and family, teachers, doctors, nurses, physiotherapists – the list goes on and on. So many beautiful words written to mark the fact that someone so very special has passed away. Someone who really did touch so many lives and made such a huge impression on so many people with his warmth, courage and humour.
It somehow seems fitting to end this ‘Diary of a hospital dad’ with the words written by Joshie’s ‘hospital mum’ on the card that went with our flowers.
‘To our brave angel Joshua. May you no longer suffer, but be eternally happy in the warmth and shelter of Heaven.’
Rest in peace, my angels.
