I hope you will enjoy a quick preview of my book.
I REMEMBER THINKING, “Every day is an adventure,” as I entered the hotel, a bit sticky from the 85 degree heat of the morning. I just never know how big an adventure it will be until there is no turning back.
Sometimes you have great control over the adventure, such as when you’re walking through deep forest and you change your pace to suit your mood. You can stop and smell the wildflowers or watch a hardworking bumble bee, or walk swiftly with eyes and thoughts on the distant mountain peaks. Or you might be in the urban jungle, taking a leisurely stroll down a city street in a new shopping district. Some store windows offer inviting views of their wares, other shops beckon with smells of freshly baked pastries, while still others are sharing their melodious tunes. It’s your choice whether to pause and experience what they have to offer or pass them by in favor of some more distant goal.
Sometimes the adventure carries you along and you just have to sit back and enjoy the ride, such as when your canoe is traversing the white water of a swollen mountain stream and you’re pulled from side to side, dodging rocks and eddies. Sure, with a few paddle strokes, you can slightly alter your course, but you’re still at the mercy of the water’s direction. Or when you are on a cross country train ride, bumping and swaying past America’s back yards and farms, and your only choice is whether to look out to the left, or to the right, or not to look out at all.
Other adventures are laced with fear and adrenaline rushes, such as a ride on a new roller coaster, or hitting the icy water of a mountain lake after capsizing your canoe. These adventures can switch from being under your control to being out of your control very quickly, and then switch back again just as quickly.
Back in the hotel, today’s adventure had none of the indications of the adrenaline pumping, out of control variety. Today’s adventure was anticipated to be one of observation, learning and listening. In hindsight, it turned out to be thought provoking, and a time for sharing advice and encouragement with others. The hotel was hosting a biennial National Organization for Albinism and Hypopigmentation (NOAH) conference, which lasted a couple of days. At the time of this writing, NOAH exists to offer information and support to people with albinism. The conference material boasted sessions on the status of current research on albinism, on the latest medical advances, on optometry and pigmentation, and on driving for the visually impaired. There were also discussion groups about work as well as social issues, and on other life experiences. As I walked the halls past soon to be occupied vendor tables, their signs and pictures offered a glimpse into the difficulties of visual impairment and evoked memories of my life. As I approached the meeting room for the first presentation, I passed the beginnings of other people’s greatly varied adventures, some carefree groups of old friends getting reacquainted since the previous NOAH conference, many pairs of new friends just getting acquainted for the first time, and a few singles standing in uneasy anticipation.
As I sat through the first session’s presentation, the second session’s panel discussion, and the rest of the conference, I was struck by the similarity of other’s challenges to my own, and the lack of information available to young parents of visually impaired children. I heard many of the same questions repeated by different people. I heard more than a few people say that their doctors had little information and few encouraging words to suggest that their child would live a close to normal life. Only a handful of us had a great deal of life experiences to share with those attending the conference. The majority of conference attendees were young adults sharing friendship, and parents looking for whatever information they could gather. Out of this short adventure of sharing a few years ago, the idea for this manuscript was born.
My goal in sharing some of my life adventures and experiences with you is to provoke some thought on your part about your own life or your child’s life and what is possible. Maybe reading about my expanded horizons will boost your confidence and set in motion the expansion of your own horizons. If you spur your child to do something that they might not have otherwise considered, or you yourself do something that you would not have done, then my experiences will have been worth sharing. Even though my experiences have centered on breaking the boundaries of visual impairment, many of the concepts that I will share could work with other forms of physical impairment as well. My life has been shaped by stability during childhood, and very interesting experiences. I believe the key to my success has been to keep trying, using what works, and learning from what doesn’t work. . . .