Since Aidan’s diagnosis, I have often wondered if it would be easier to lose your child suddenly or live knowing they will one day die. Honestly, it isn’t even comparable.
Losing a child is gut-wrenching, heartbreaking and a million other adjectives all thrown into one and knowing is no more, or no less, painful than not knowing. They’re just different kinds of bad.
I have spoken often of our struggles and the grief that comes with knowing your child is going to die, and no doubt there will be many more blog posts of this topic. However, if I was to find the silver lining in all of this, I would say that knowing Aidan was going to die had some advantages. I spoke about this at Aidan’s memorial service:
“For us, we take comfort in knowing we have no regrets. We took him to places and saw things that most other children (and even adults) only dream about – from going to the zoo to football grand finals, meeting the Wiggles, only to be topped off by his Starlight Wish where he went to two State of Origin games and met James Maloney and Paul Gallen.
We made sure we cuddled him every day and soaked in all those good moments, etching his little smile permanently on our brain. There were times I would lay awake just watching him, knowing that I needed to take in every mark and line on his face, getting ready for when this day would come. We feel blessed to have had this preparation.”
There is never enough time to do everything and we would have given anything for just one more day but we are certainly better off than those who never got to say their goodbyes.
One of the other advantages of knowing your child is going to die is that you get to tap into resources and get support in advance. We were lucky that we had palliative care and Bear Cottage nurses guiding us on our journey.
In Aidan’s final hours we were blessed to be able to take him to Bear Cottage, to lie with him and to spend three days after his death in the safety and security of Bear Cottage. I can’t imagine what it would have been like to have had him suddenly die in the emergency department or in the ICU. We had social workers with us, grief books on hand and a range of support services to guide us through this unfamiliar territory. And, as I mention in my previous post, we had the advantage to be able to pre-plan some aspects of his funeral. Does it make the pain any less? Certainly not, but I’m hoping it does help with the journey.