Updated: Aug 27
2017 was the beginning of our new normal, the one we never imagined or wanted!
Of course, we now all relate to the phrase ‘the new normal’ due to Covid-19 but our new normal actually began three years ago, firstly in January 2017 when we were told that Joshua had experienced ‘extensive brain damage and would be severely disabled, we were thrown in to a world of parenting a child with complex medical needs. Secondly, in May 2017 when we were given the shocking and devastating news that our son Joshua had only ‘weeks, if months to live’ and more so on this day in August 2017, the day Joshua passed away. We’ve been surviving our new normal ever since, the one of nightmares, as we entered the club that nobody wants to be a member of, that of bereaved parents/grandparents/siblings. I once read a quote by Neena Verma that summarises our situation perfectly “There are words like ‘orphan’, ‘widow’ and ‘widower’ in all languages. But there is no word in any language to describe a parent who loses a child. How does one describe the pain of ultimate bereavement?”
I’ve been ‘shielding’ for three years, shielding others from the pain I bear as a bereaved Mummy. Hiding the true extent of my grief to please others, to avoid awkwardness and to shield people from the reality of the nightmare that is child bereavement. I grieve privately.
I’ve worn face masks for three years now, different face coverings for different situations and people. I’ve learnt that I am an actress, and a damn good one! You see the ‘public me’, I allow you to see me ‘strong and coping’ but do not be fooled into believing that is my reality. Who am I? I am broken, I am lost but I am determined to survive and learn how to be 'this me', the grieving Mummy, even though I desperately don't want to be, I struggle to accept it but I am. I am learning to find a way to survive the mental tortures and the ‘what ifs.’
During the past three years we’ve tried to navigate our way through the maze that is the grief of child loss/child bereavement, this pain has no final destination as the grief will never end, we simply have to hope that we can find happiness on our journey. Sometimes we’ve taken U-turns, often it’s felt like we’ve come to a ‘dead end’ but thankfully, the Sophie and Oliver have given us strength and with support we’ve remained on route, ‘hope’ keeps us moving forwards, it keeps us on the ‘right path’.
Joshua passed away three years ago today, I’m still very confused as to how this can be true and struggle to accept that he is no longer here, I’m still very angry, I’ll always be broken and feel a huge sense of loss, it’s relentless, there’s not a single day that goes by where I don’t miss my brave boy! We don’t need reminders about our loss, but they exist everywhere, for example, when I see Sophie playing alone, she should have Joshua by her side, even if it’s to argue and squabble with. This particularly hit me hard during lockdown, Sophie of course has Oliver and they’re inseparable but there’s a five-year gap between them, she misses Joshua incredibly and (just as the counsellor predicted) is beginning to display more grief, as her awareness of death and loss develops.
This year has also been challenging knowing that Joshua would have started school in September 2020, I’ve watched others drop their children off at nursery knowing that I too should have been kissing Joshua and waving him in to be with his teacher and friends. And now, we should be preparing for his Reception year, how I wish we were!
I observe children, knowing that they’re approximately 4 years old (as Joshua would be now), wondering what his personality would have been like, who he’d have become, his likes/dislikes…
It’s as though a big, dark cloud bursting with ‘what ifs’ haunts me, blasting me with teasers of a life that should have been…
I kept the circumstances of Joshua’s death hidden for over two years, I began to confront my grief and post-traumatic stress disorder, when I shared the details presenting at the North West Children's Palliative Summit in February 2019, just before the #pandemic. We had provided Joshua with dignity in death however he did not receive dignity after death. On this day, three years ago, we’d had the most amazing day in London as part of a long weekend break. Joshua’s last day was spent at @WembleyStadium watching his Daddy’s favourite rugby team @WiganWarriors in the #ChallengeCupFinal. Joshua passed away that very evening, he passed peacefully, nose to nose with me, in my arms. His passing was dignified, it was respectful, it was peaceful. However, the events which occurred afterwards were not…
There are many lessons to be learned from the events which followed, improvements in practice, aftercare, can and should be developed from our experience. We followed protocol (supported by our professionals) and reported Joshua’s death, we then had to wait over 9 long hours for anyone to attend! It transpired that the #GP on shift that night had avoided our multiple calls and we were left waiting for the morning shift change. When the GP finally arrived, he was extremely apologetic but by that time (9 hours later) we had already made the decision to involve other services via 999, this should not have been necessary! Though we had our ‘paperwork’ in order for an ‘expected child death’ we were left with no option but to have police attend, we waited over 11 hours before being able to make the journey 'home' with Joshua's body. James had to make the long and difficult drive, whilst in the early stages of grief, the numbness, the shock. We travelled (with authorisation) from London to our Children’s Hospice in Chorley with Joshua’s body wrapped in frozen peas as he lay across my knee in the back of the car- this journey demonstrated our desperation to be at our beloved ‘holiday home’ Derian Children’s Hospice. We arrived over 16 hours post Joshua’s death which also create problems with regards to the condition of his body and treatment was required, we also had issues with coroners, etc. In essence, without delving into details, the situation we found ourselves in was horrendous, many of my PTSD flashbacks relate to this trauma. We’ll be forever thankful to Derian Children’s Hospice for the support and care, which they provided throughout Joshua’s #palliativecare and more so, after his passing. Once at the hospice we were supported to put in place some of our Advanced Heath Care Plans, we were given time to absorb the circumstances and begin to #grieve. As you can imagine, we now feel a duty to promote positive change in order to prevent other families from experiencing such trauma which is why I began to voice our experience and agreed to be the guest parent speaker at the Summit.
‘Joshua’s journey to a magical place,
Is a wonderful trip into outer space.
He jumps on a rocket ship and gives us a wave,
Blowing kisses and smiling, he’s so very brave!'
Today we mark three years since our world was turned upside down, three years since I last held Joshua, kissed him, smelt him, physically embraced him and provided his care. For I gave our precious, brave boy a kiss goodnight and he never woke to see the next morning. Joshua’s name is said daily, he may not be here physically, but he is very much here! He’s a part of me, he’s a part of our family and always will be!
Photography by Asia Burrill
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