Holly and Marc Ruxin’s son Trevor is the inspiration behind TrevorTCR. Until he was four years old, Trevor behaved normally - doing all the things that boys do. Starting around the age of five, he began to lose many of the physical and mental skills and abilities he once had. His medical condition is undiagnosed. However, his laughter, joy, and spirit are omnipresent and contagious. As Holly and Marc, like many parents with special needs children, manage their busy careers, their other children, and the various demands and unique routines involved, a community was built to support and nurture Trevor and help him thrive. The magic of Trevor’s community is evident in his laughter, joy and vivacity and the happiness of all of those that partake in his care. He is an energetic force who inspires people around him.
We want to grow the blanket of the Trevor community. We believe everyone matters and everyone has something to give. We want to build a community that allows all of us to feel valued, empowered and connected.
By Holly Ruxin, September 2014
I’m not exactly sure of the specifics of how this message was sent to me as I was growing up, but I am sure that the resounding message across the board was: achieve. Achieve good grades, achieve acceptance into a good college, achieve acceptance into a good graduate school, achieve a good job, achieve money, at some point achieve a relationship and a family. And if you can achieve each of these tangible accomplishments, then you have a life worth living. I don’t suspect the words were ever spoken to me exactly like that. But the message was continually communicated from my parents, teachers, mentors, family members and friends.
So I worked to achieve - and to achieve the life on paper that looked like I had it all. And then one day everything changed. After having a wonderful baby boy who was growing into a wonderful toddler and a thriving young child, something wasn’t progressing the way it was ‘supposed’ to. Milestones were not being met. At almost five years of age, our perfect son started missing and then losing all of his milestones. He lost his ability to talk, to walk, to use his hands and to pretty much do anything physically or outwardly mental
While any situation like this is difficult to comprehend and deal with, the slow pace of how this transpired over the course of several years was especially difficult to get one’s mind around and incredibly more difficult for the heart to understand. And no one seemed to know what was wrong with him. All of the accomplished doctors who had achieved their education at top hospitals, held jobs in top think tanks, and had achieved renown in their fields – they were at a loss. And thus so were we. As the years went by, and the prodding and poking and traveling and discoveries led to dead ends, we came to understand the deep limitations of our knowledge about the brain and the vast limitations of even those who had achieved at the highest level. The ones who had accomplished all that they were supposed to as society defined it for them still could not help
There are a myriad of issues to navigate when taking care of a child who is losing skills -- therapies, schooling, testing, and the list goes on. But the most difficult thing for me to wrap my head around was: what am I going to do with a child who can’t achieve? A child who can’t achieve all of the skills and tangibles that I was taught mattered most. For our young son there would be no talking, art, drawing, reading, sports, getting into schools, making friends …. all of the things that my friends and family members with kids were focused on around me. He was clearly not going to achieve any of it.
How do I not feel like a total failure? If my child can’t keep up with the expectations of the society that we live in, any of the expectations, then honestly, I couldn’t figure out what ultimately is the point of his existence? And I struggled with this thought for more time than I am even able to admit. Until finally, I started seeing how misguided I was, how I was looking in the wrong direction and how I had been taught to look in the wrong direction. I was facing the wrong way.
This is not a realization that one comes to overnight or even over the course of a year. It came for me after years of thought and observation and honesty with myself and those around me. The new direction that I was facing was the beginning of a new understanding. Instead of all of the tangibles I had been taught to focus on, the achievement that really matters is to be treated with love, kindness and respect, and to ultimately treat all others in the same way
It has taken me years to understand that striving for this type of understanding requires small steps, taken one at a time. Over the course of my experience, any time that I questioned the way forward or found myself caught back in the old messages that trained me, I simply look at my eldest son and recognize his innocence and understanding. Finally what became so abundantly clear to me is that Trevor has achieved more in his short lifetime than any person whom I have ever known. I began to understand that he was born with an understanding of how to garner unconditional love from those around him. He was born with the ability to give unconditional love back no matter what the circumstance – he exudes only kindness and compassion and heart. And as a result he vastly changes the lives of every person he meets. He is an incredibly bright light who smiles at strangers, who can’t talk but has laughter that can melt an icecap, who never complains, who sees joy in the simplest of gestures.
Trevor has achieved something that as a parent I can only ever hope for my other two children, for myself and for any human being. He has achieved peace born out of kindness and love for one another.