Updated: Aug 27
In 2017 James and I travelled (with authorisation and ‘support’) from London to our Children’s Hospice in Chorley with Joshua’s body wrapped in frozen peas as he lay across my knee- this journey demonstrated our desperation to be at our beloved ‘holiday home’. We arrived 16 hours post Joshua’s death.
I have been trying to process this this for some time, wanting to make positive change and finally began to share my feelings when I presented at the North West Children's Palliative Summit @GMEC_SCN @GM_HSC in February. #CYpEol. I had also begun to write an article to blog etc to discuss and present the issues, changes required and those made.
I didn’t think that anything would ever come close to that surreal, indescribable experience…That, I assumed, would be the most unbelievable situation I would ever face. But this #Covid19 #Coronavirus #pandemic raises similar fears of anxiety, bewilderment, denial, disbelief and confusion.
We have been adhering to #socialdistancing rules, my parents are also in #selfisolation due to being high risk. I can’t help but wonder how additionally unnerving this whole experience would be if Joshua was present, and this is the reality that our families face! The additional fear that their child with #complexmedicalneeds, their #medicallyvulnerable child may be a victim of this horrific virus.
The world seems so uncertain at present, our mental health will be tested just as much as our physical health during the coming weeks/months. Our #JollyJosh families are supporting each other during their isolation via an online network. Should you wish to join please contact Hello@JollyJosh.co.uk
The only certain we have is to know that our amazing trustees are facing this crisis to protect us and our families, together with their #NHS friends/colleagues, our #carers, our #keyworkers, etc, with the aim to provide safety and care. We thank them with all of our hearts and wish them safety and health during this difficult time.
Image: Created and shared by one of our parents 'The Colours of Down Syndrome'