Several times in his teenage life my disabled son has asked me, “What is my purpose?” His question is very individual: he is not asking about the purpose of life, he is seeking the purpose of his life. As his dad, I try to have an answer for him each time, and I try to change it up a bit, not saying the same things over and over. My other kids who are not disabled would be impressed, I think I was more of broken record at times in my answers to their repeated questions. But it is a good question after all, and one that crosses all of our minds from time to time.
From his earliest years in his growing abilities to communicate, he started asking this question in his personal search to figure out where he fit into the scheme of things. By age 9 when he was able to use his assisted communication device he understood that his life was different, that his disabilities separated him out from other kids, and he wanted to learn and be of some contributing use to society.
One of the things he decided to do was write First Lady Laura Bush of then President George Bush. Somehow he had learned that she had a background in education, and he decided to go straight to the top to ask for help and advice. We sent his letter off to the White House, and a couple of weeks later much to our astonished surprise we received a call from Mrs. Bush’s secretary. Laura Bush had received his letter, wanted to acknowledge it, and let my son know that she shared his concerns about good education for the disabled, most specifically in my son’s situation, the deaf-blind. A few days later a personal letter and White House souvenirs arrived. I don’t get into politics, ever, but regardless of any opinions I may or may not have had about the Bush presidency, my estimation for Mrs. Bush shot through the roof.
Her response gave my son a gift he carries with him to this day, and that is a sense of purpose that his life, his energy, his effort might have an impact on other lives for good. He wants to see disabled, special needs and challenged children everywhere receive good, positive education from trained and dedicated professionals. He decided he wanted to show with his own life that disabled people can become highly contributing members of society. With the publication of his first book, he has accomplished this goal.
My sons’ disease is particularly difficult, and there are many children around the world who share this disease. Often the parents are left devastated and heartbroken, with good reason. But the children more often are not depressed about their condition, if able to express themselves they may tell you that they love life, and they want a place within this world. It has been an amazing thing to witness now for a long time. Amazing yes, and inspiring.
I have a good friend in another country who has two children with this disease. I heard him speak briefly one time at a conference, and I was empowered by his words. He explained that when his children were born and diagnosed, his wife and he wondered what it meant to their lives. They decided that God had given them a mission, to give their kids the best lives they possibly could for however long they might last, and to give them a sense of purpose to their lives. Then he said, “We knew that if we could do that, if we could give them the best life possible, we knew we would have the best life possible, and all of us would know our purpose.”
It is not always easy to find purpose in terribly difficult situations. I would never fault anyone for struggling with this question, ever. There are some questions that will never be answered, in this life. There are problems for which there are no solutions, at present. There are challenges that are hauntingly lonely, and unexplainable. In the scope of the whole human experience, probably most of humanity can relate to this on one level or another.
I encourage people though to ask those unanswerable questions, to give voice to those feelings that seem to defy our comprehension. Perhaps it’s a lot like the early explorers who wondered what was beyond the edge of the horizon, it is those questions and that desire to understand and become that lead us, any of us, to the fulfillment of finding purpose.