Toby had a pretty good weekend, and is slowly regaining some energy: he was able to walk a bit and go up and down the stairs. His mood is sunnier too. I however, have been completely unable to muster the energy to write an update and am so happy to share this letter about Toby from my father. I want to let you all know that we are fine and settling into our wonderful new home on Temple Court. I will update soon.
Toby is an extraordinary human being. Throughout his lengthy ordeal, he has, incredibly, preserved his smart, sharp intelligence, his sense of humor, curiosity, good natured complexion, and, short of a better term, his stoicism in the face of suffering. It is he, to my mind, who enables his parents to be such remarkable people.
Subjected to cruel and savage treatment, consisting in being killed slowly and then saved at the last moment, strengthened for the next killing session, cycle after destructive cycle, operated again and again, disfigured physically, he has managed to preserve his amazing character intact and to convince those he comes into contact with of his divine imprint. He seems a living instance of the separation of body and soul.
It is hard to believe, but true nevertheless, that, even in his misery, the barely four year old boy has preserved his gracious generosity (and I know precisely what I am talking about) and the ability to escape, at least occasionally, the world of suffering, which is his share since last April.
I write these lines with great difficulty, but they reflect truthfully my deep conviction that what I describe is entirely accurate, though inadequate to convey convincingly Toby’s unusual personality.
I hope and pray he will eventually be cured of his awful disease and that the cure will not affect too heavily the life of this remarkable boy.
Ed Clark, Christmas Guest
7 months ago