Trevor Cole Ruxin

2003-2023

I had never really thought much about the joy of the unexpected before having Trevor. The idea that things are always so much better when they aren’t burdened with expectations, in many ways, defined the twenty years I spent raising him. As anyone with children knows, there is no adequate preparation for parenting. Instead what you’ll find is a random walk filled with incredible highs and lows, held together by an unimaginable and unconditional love that is impossible to understand before you find yourself swept up in it.

At the age of five I heard Trevor say his last word to me (he used to call me ‘Daddens’), but it was almost exactly at that moment that he started to become one of the most important teachers I will ever know. Even as he lost more and more abilities, he just seemed to increasingly learn to live “in the moment” in a way that most people can only dream of. I doubt he was never distracted with many of the superficialities of modern life (elite schools, money, status) but more was focused on the simplest and most important aspects of life: love, connection, and gratitude. 

Over the years people would ask me “how does he communicate?” Because he couldn’t use written words, an iPad or many of the other devices that have created opportunities for people that have lost their words, for many years I struggled to describe the language that Trevor created using mainly his eyes. For the people that really knew Trevor, it was obvious that he was very present, paying attention and communicating in the most beautiful and subtle way. Of course, looking back, I will never know what he was actually thinking, but it is my hopeful desire that one of his special gifts was his ability to extract only the positive and leave all the rotten bits floating in the ether. 

I will forever be grateful for the thousands of hours he spent with me watching pretentious art films and meaningless football games, listening to obscure music, and letting me jog him down the Great Highway or around Bernal Hill. He asked for nothing and gave me everything I could ask for in a child. 

Taking care of Trevor will no doubt be one of the most important things I will ever do in my life. Although it was very often hard and heartbreaking work, it was probably exponentially harder for Trevor than it was for his family, but he never complained.  More likely he hid his discomfort to spare those around him how hard it must have been to be trapped in his body. That was Trevor. Watching his selflessness, bathing in his calm, locking eyes and seeing his innocent and authentic soul - this was the most profound gift that I can imagine receiving. The joy of the unexpected. 

I will never forget Trevor. He is a beautiful flickering flame that will never go out, and the world is that much brighter to have had him in it for as long as we did. 

Here is photo voyage of Trevor’s beautiful life.

https://drive.google.com/file/d/1TnOP0o33RYkH5G1FrCdpyfrlDssCCZeH/view

Songs fr Trevor.