At present @ITV @Coronation Street are revealing a storyline for Jane Danson (Leanne Battersby) and Simon Gregson (Steve McDonald). This story of a #mito diagnosis became our reality on this day in 2017, just 8 days after Josh's 1st birthday, after months of incorrect ‘viral’ diagnosis’, hospital admissions and then confirmation of extensive brain damage. We arrived at ‘that day’
On this day, I remember being so very cold, my body went into shock and I couldn’t stop shaking. I remember making noises that I didn’t recognise as my own. I remember behaving like a toddler, ‘if I don’t look at the consultants, stay hidden in my husband’s arms, they’ll go away, and this will not be real!’
May 16th 2017, we sat in a therapy room at Manchester Children’s Hospital with our first born son Joshua, who was loved beyond words, to be given the shocking and devastating news that he ‘had weeks, if months to live.’ We were introduced to the possibility that Joshua may have Mitochondrial Disease, something we had never heard of before. There was no cure, Joshua would now receive #palliative care and #careandcomfort were now all that we could provide. We were asked to discuss a Do Not Resuscitate Order #DNR and advised to meet with a #counsellor #psychiatrist for support. We had been given membership of the group that no one wants to be in!
This was not a TV programme, it wasn’t a soap opera, I wasn’t an actress, this was our reality, as it is for many other families.
We were told to inform our families, they needed the opportunity to come to say ‘Goodbye’ as Joshua would be taken to theatre the very next day for an emergency biopsy, he was so weak he may not survive the operation. James had to make those phone calls, it’s unimaginable, I have no idea how he did, I couldn’t even bring myself to listen. The shock for our entire family devastated us all. We took many photographs on this day, though we were indescribably heartbroken, we needed to make memories with our boy.
Joshua thankfully survived the operation, after a few weeks we were transferred to @Derian House Children’s Hospice, Chorley, a place now very dear to our hearts.
We made the most precious of memories (including our wedding day) until Joshua passed away, August 27th 2017, just three months after ‘diagnosis’.
Oliver (our son) is now 10 months old, I feel mind blown to know that he is of similar age (albeit 2 months) and size to Joshua when we were given this horrendous news. My PTSD is heightened during May, and this year’s flashbacks have been overwhelming, perhaps due to Oliver currently being so much like his big brother during such an emotional time.
The 16th May will forever be in our darkest of nightmares yet one we can not wake from. I wish that this was a soap opera, I wish I could change the channel, to watch us live the life that should have been, if only!
♡ Photograph: 16th May 2017, 'That Day' ♡