57 years ago, my brother Steve entered this world and started his journey, changing peoples lives—but not in the usual way. It would seem unlikely that someone with my brother’s many physical and mental challenges could do much of anything. In fact, the established view at the time he was born, both medically and socially, suggested that he be locked away and forgotten. My parents and especially my mom who was only 20 at the time didn’t agree. Their plan was simple—to love, nurture and support him, no matter what. To watch him grow. To help him reach his highest potential.

After about a year, I came along. One of my earliest memories of my brother was playing with building blocks. I was the builder and Steve was the demolition guy knocking over my creations. We were the perfect property development team. Four years later, my brother Neil was born and I suddenly became the middle child. For those that share my plight, you understand. I was devastated.

Steve had a number of unique medical issues, but they did not define him. Throughout my early life I was able to observe many physicians and therapists. I saw those that treated Steve and those that cared for him. There is a difference. Doctor’s offices became familiar places to me—and I was comfortable there. I learned that I wanted to help others also. My career as a physician I owe to Steve.

People often underestimated Steven’s abilities. On the surface, many dismissed him outright. Even professionals scoffed at what we hoped he might accomplish and predicted a short life. He exceeded all expectations! Steve loved music, and movies, and gadgets. He loved the Sound of Music and Mary Poppins. He liked riding fast.   Above all, his favorite thing was opening presents, lots of presents, even when they weren’t his. Of course, birthdays and Christmas were his favorite days of the year. He was especially fond of Mr. Rogers. It was an unusual day if Fred Rogers was not a part of our daily experience.

Who was Fred Rogers? Many of you know him. He was an advocate for children, author, songwriter and activist. He was a symbol of compassion, patience, and morality. He always wore sweaters on his TV show, Mr. Roger’s Neighborhood, all knitted by his mom. I would like to read a quote from “The World According to Mister Rogers: Important Things to Remember”:

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.”

Common themes of Steve’s interests were love, kindness, hope, friendship and fun. He loved pretty blond nurses. He liked watching football and listening to baseball games. For some reason, he loved Tejano music—played very loudly! He liked parties. Like you and I, he had good days and bad, and he would let you know it.

As a family we learned many things from my brother. We learned the value of small blessings. Optimism and hope was a staple in our daily life as well as how to deal with frustration. Steve was our barometer of people’s character—was he acknowledged by them? Was he treated as others would expect to be? Personally, I became a more sensitive person. More patient. A better listener. Unfortunately, he did not make me a better driver.

My experience also taught me that the system is hard for families like mine. Many become isolated. Many give up, waiting for resources that might allow them to care for their loved ones in the home. I learned that you have to be bold to advocate for those that are weak and unable to speak for themselves.

I learned that doctors don’t always know what, or why, or how—and that’s ok. I learned that you have to sometimes stop fighting and love yourself a little now and then, even when no one else seems to care. Forgiveness is harder than it seems. I learned the value of my family of friends and the strength they give me.

Finally, although she would not describe herself this way, I grew to admire my hero, my mother. I doubt that I could care for and advocate for another person for 57 years in such a selfless and devoted way. She has always stood for fairness, loyalty, and excellence. She has always been the rock and conscience of our family.

Steve had a unique life and he influenced many. Without him, I would not be here and would not know the life I lead today. I don’t believe in randomness. I believe in connection and purpose and my brother had a wonderful purpose. I believe that my brother is now free of the shackles of his physical limitations. I love him and immensely miss him, and look forward to the time when we meet again.  I imagine that when he entered heaven they were playing, “It’s a beautiful day in the neighborhood”.

As a family we have known this day would come for some time, but it is still difficult.  We are finding our “routine” lives to be somewhat empty, though I welcome the diversion.

Check out basic information about grief by clicking on this link.

Mark J. Netoskie, MD