Palliative care is life affirming and not about giving up...

A great statement regarding palliative care for children from the International Palliative Care Community following the death of Charlie Gard resonates so deeply personal to me, as a newly bereft parent. I struggled throughout Sophia's life in making decisions with her regarding quality of life. More often than not, we were met with push back from clinical teams in the hospital setting, community practitioners and even some friends and family who felt exhausting all and any option for remedy was the best approach / best practice.
Sophia led the charge early on, in wanting a choice in decisions effecting her body. Canuck Place Children's Hospice and our community paediatrician supported Sophia and myself in making well informed and thought through decisions regarding any procedures, medications, treatments. 
The last three weeks of Sophia's life were so very difficult. Her body was failing her but her spirit and desire to live was epic. Sophia was upset and sad that her body was failing, tears streamed down her cheeks regularly. Yet, every time the doctors, nurses or I asked her if she wanted to be more awake or did she want us to intervene, she clearly said no. Her pain and discomfort were extreme and her body was relentlessly shutting down. 
The last twelve hours of Sophia's life were the most comfortable. She slipped quietly away...
"Palliative care is life affirming and not about giving up, but about ensuring that the child can have the best quality of life within the realities of their condition."
This is true for Sophia's entire journey and most importantly, during those last few weeks. Palliative care is LIFE AFFIRMING...and should be afforded to every child with a life limiting or life threatening condition. 
Loved Sophia ❤️❤️