Beautiful, painful, miraculous love

This article is reproduced with the kind permission of Butterfly Children’s Hospices

It’s been a hard few days at our Home. Hearts are not just broken, they are battered and torn into shreds. In 24 hours, we had said goodbye to two beautiful children – one child we knew intimately and loved unconditionally for 3 years, and another we had only just met, but loved from the instant we looked into her haunted eyes.
Conor has been our boy since June in 2012. He was severely brain damaged with a very unstable seizure condition. One week  he would be completely seizure free, the next he might have up to 80 seizures. There was no pattern, no rhyme or reason to it. We worked on getting the best control possible, but we also knew any day might bring a catastrophic  decline in his situation.  We had to accept that Conor’s treatment plan would not involve dramatic medical interventions or heroic surgeries. Those things would not have helped this special boy. What helped Conor was the love and tenderness of his nurses and ayis. They understood his needs and structured his day around them. They didn’t just chart his seizures and reposition his limbs – they took the time to really know Conor. They loved him through the long hard weeks, and celebrated as his seizure activity came down to a bearable level. They read to him, sang to him, massaged his limbs, and persevered with sensory therapy.  These were all the small everyday things which made such a difference in his life. These people recognized the brave little character who was trapped within the damaged body, and they loved him without reservation. In the last 24 hours of his life, Conor was very much at the interface between life and death. He was breathing slowly, lying quietly and seemed to be drawing in all the love around him. His ayis and nurses tended to him with utmost care.  Katie was in Nanjing, but returned quickly to Changsha when she got the news. She arrived in time to kiss his sweet face and say good-bye.  Conor  died peacefully and unafraid, surrounded by his people. He left us grieving hard, but thankful for every day of the past three years. Please remember him with us – we miss this dear face so much.




Published on: 13 November, 2015 | Last modified: 13 November, 2015