Updated: May 16
On this date 2017 (just 8 days after Josh's 1st birthday) we would be taken to the therapy room @Manchester Children's Hospital for our pre arranged meeting with Joshua's consultants, I knew then that it wasn't going to be positive news. I had thought that perhaps they'd explain that his disabilities would become more complex (if possible). I had no idea just how severe Josh's prognosis was, we were delivered the shocking news that Joshua had 'weeks if months to live.'
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!’
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 care and comfort 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 and #psychiatrist for support.
I still have flashbacks to that day (and others) and have since been diagnosed with #PTSD - who wouldn't have post traumatic stress disorder having been though such devastation?
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.
The world as we knew it collapsed, our bodies went in to shock, both emotionally and physically. I never imagined my life would experience so much heartache and despair.
Thankfully Joshua pulled through the operation, he amazed us, he fought so hard! We were transferred @Derian House Children's Hospice a short time later.
I remained in denial, in shock. Love could cure him, I could will him to continue to survive. I needed him, we needed him!
Something I've struggled with since the media coverage of two very prominent and public similar situations (#mito) is the fact that families who will face this situation may now have the perception that they have to be seen to be 'fighting.' Believe me when I say, we fought! We were determined, we would have done anything and everything to have our son here today. That was what I needed, I still need him! However, we had to ask ourselves, what did Josh need? What was in his best interests, not ours... Our brave boy needed to rest, our brave boy needed to die with dignity. Every metabolic dip caused huge affects, they took his brain, his gut, his bowel, his temperature gauge... So we signed the #DNR (Do Not Resuscitate) paperwork as advised. We did this because we loved him, because we adored him, because we knew he needed to find peace. I'd have given my life to have traded places, I'd have given him a lifetime of care as my severely disabled child with complex needs, I'd have fought for him and cared for him throughout my entire lifetime. But we made the most difficult decision with our precious boy at the very centre of our thoughts, to allow Joshua to die with dignity.
I may not have gone to meet the Pope or have created an 'army' or have publicly 'fought' to save my son but I did fight. I fought to make memories, I fought to put my own needs aside, I have fought to survive each day since the 16th of May 2017.
Denial meant that I actually wouldn't fully acknowledge Josh's prognosis, I had hope, I would always have hope! I clung on to hope, to a miracle, right up until the moment Josh passed. I never thought it would actually happen, I had always hoped the professionals were wrong, especially as Joshua fought so hard after each metabolic dip. I hoped he'd prove them wrong... #Hope, that was all we had!
Obviously each situation is individual and more complex than the media interprets. However, due to these 'cases' and people's opinions I felt the need to hide the fact that I signed Josh's DNR because I was afraid that this would be seen to be giving up. How ignorant and incorrect anyone who thought that would be! In a world of media frenzy which may pressure other families and set precedent, I openly disclose that I did the hardest thing a parent could do but I never, ever gave up on Joshua!
If only love could have cured him... 💔
♡ Photograph: 16th May 2017, 'That Day' ♡
#grief #childbereavment #childloss #emptyarms #rainbowbaby #prematurebaby #premie #siblinglove #siblings #siblinggrief #hope #love #mito #mitochondrialdisease #genetic #metabollic #palliativecare #palliative #DNR #dignityindeath #loveafterloss #parentingafterloss #bereavedparent #careandcomfort