Updated: May 9
On this date last year (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 told that he had 'weeks if months to live.' 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?
Josh would be taken to theatre the very next day for an emergency biopsy (we needed a diagnosis, something we still do not officially have), we were told to prepare for the fact that he may not wake as he was so very weak. We had to inform our family who came to be with us. 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. 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.
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' ♡