The Power of a Story
Hello! Some of you have not heard from me for awhile, my apologies for that, I took some time off from writing to focus on our development and activities, and then a couple of weeks seemed to turn into a couple of months very quickly. It's been an eventful and busy year, I've had several speaking engagements beginning in January presenting as a parent advocate before a pharmaceutical conference in San Diego. Our list of members is growing, I've had opportunity to coach and help over 35 individuals and families dealing with various forms of disabilities and special needs this year. Our mailing list is close to 1,000 now. We were able to help several families with emergency needs, and we helped one family with a young child with a rare disorder go to Disney World to create a great family memory. A few weeks after the trip their child passed. It's really been a blessing to be able to be a small part of so many lives, some people I did not know even just a few months ago.
This year has reinforced a concept that I realized so strongly a few years ago when I was working in construction with immigrant young fellows who spoke very little English. There were a number of languages involved, and learning to communicate and understand each other was both challenging and hilarious. What I saw unfolding before me was each of these fellows had a story, a strong one, a story which often captured my attention and at times moved me to tears. The experience helped me to greater realize that each life is a story, has value, each with its own unique experiences, challenges, dreams, heartbreaks and successes.
I apply this concept to my experiences with people dealing with special needs. Growing up I had a close friend who had muscular dystrophy and was in a wheelchair. As a child I loved pushing her in her chair, it was fascinating to me. As I reached adulthood, she died unexpectedly, and I thought over all the years I had known her, and I could not remember one single time we even talked about her disability. She was a gifted artist and full of stories, dreams and ideas, and those were the things we shared. Everyone who knew her loved her.
My father was disabled from a horrific accident a few years before I was born. His doctors told him he would never walk again, but he refused to accept that prediction, and months later he walked out of the hospital. I never knew a single day that he wasn't in pain, often great pain. He never let it slow him down. As a kid I couldn't appreciate the difference his stubborn determination had made in his life, but I look back on it now with pride, and it's part of his story, and part of mine.
I've had a life's worth of observing people who refused to accept limitations placed upon them. Specialists said my older son Adam would never walk, after a lot of hard work he learned to walk and he's still walking today. My son Matthew has a rare disease that is terminal. When he was diagnosed they told us it was quite severe, he was deaf-blind and he would likely not survive past 6 months. We never started counting months. Last week Matthew turned 21 years old. He has a determination for life that inspires me daily. Many of you know he has written a book, and he has composed over 20 pieces of intricate music using a computer program.
There are so many more stories of people I have come to know, people meeting their physical or mental challenges head-on and rising above limitations to succeed in spectacular ways. And then there are people who may have little to offer others but love, acceptance, kindness, or encouragement. But aren't these some of the character traits that compose what we would consider a great human being? When we encounter people who have nothing more to show us than a kind smile or a grateful "thank-you" aren't we often left changed, even if only for a moment, by such gentleness.
I am also well aware that not every story is a success story, or even comes close. Through the years we have watched dozens of children die who have the same disease as my son. Some so young they never had a chance to prove themselves. People we pass indifferently on the roads, in the stores, or sitting near in a restaurant are very often dealing with tremendous burdens of the heart and mind. A parent grieving over their child who is gone, or a parent dealing with the challenges of caring for and providing for their child with special needs. Each life has a story, and these experiences are all part of these stories, each one unique in its own way, each one powerful to consider.
I founded AMG4D in honor of my sons who have taught me far more than I expect I will ever teach them, things as strong as perseverance or as delicate as how they deal with the rejection of strangers on a daily basis. In those respects I have led a life of privilege, observing things up close and personal that weave together a story I very much want to use to encourage and empower others in the challenges they face in their own stories.
It has been an honor to become a part of so many lives this past year, and I thank you for following my letters and essays, and especially to those who have told me they've missed them the past few weeks! We are developing a new website which is up now, and will be growing steadily as we launch into the new year. It's at the same web address, www.amg4d.org. We've been able to host many families and individuals dealing with special needs at our dinner events, and I am looking forward to what we are planning for 2019. If anyone is interested in obtaining my son Matthew's book or some of his music, please contact me at your convenience.
This time of year as families gather and wonderful memories are being created, as we continue to write our own personal stories, I wish everyone the very best along with my appreciation for your following the progress of AMG4D!