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An ordinary man's story

Brian Wulf, founder of The Adam & Matthew Group 4 Dads (AMG4D) — junio 5, 2018 — 7 min de lectura

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At age 23 my life hit an impenetrable wall after which nothing would ever be the same, nor what I had ever expected out of life. My second son, Adam, was born, and a few weeks later was rushed to the emergency room with serious, life-threatening symptoms. He was moved to the university hospital in the city, and placed into the Intensive Care Unit where he spent several days, during which time the teams of doctors and specialists interviewed my wife and me over and over, working hard to come up with a sense of direction over his condition. Everyone was baffled. The hardest hit arrived when two doctors came into the waiting room and told us they had doubts Adam would survive.

Adam did recover, and while certain symptoms continued in his health, his overall life seemed to bounce back to close to normal, and we returned home to pick up our lives with our two young sons. However, over time a flood of details continued to emerge. Bills began arriving by mail almost every day. Hospital and medical bills were climbing into thousands of dollars. And more doctor visits were scheduled. It was eventually determined that Adam was visually and hearing impaired, to the point where he was labeled: deaf-blind. Finally, near five years of age, research doctors at the university hospital determined a diagnosis: Infantile Refsum's Disease. A very rare, virtually unheard of metabolic disorder.

Those early years of my sudden thrust into the world of a dad with a special needs child were incredibly bewildering and discouraging.

As a young man, young father, trying to run a newly started business, I wondered how many blows would come and when they would stop. I was in a financial crisis trying to manage the bills and life. I was in an emotional crisis not understanding what was happening to my son and my family. I saw my wife going through difficult emotions and her emerging sense of limitless energy she poured into our son to help him. I agonized over how to explain to my oldest son, a year and a half older than Adam, what was wrong with his little brother and how we had to take care of him. Our extended family members had no idea of what to say, what to do, or how to help. There was sporadic encouragement and support, but it did almost nothing to relieve the feeling that we were utterly alone in a world we could scarcely comprehend. Friends seemed to start distancing themselves, not knowing what to say around us. Our church had no comprehension of what was taking place in our lives and the leadership response was generally one of, "Please keep your son quiet so he doesn't disturb our service." Those early years of my sudden thrust into the world of a dad with a special needs child were incredibly bewildering and discouraging.

Though for me, as a father, there was a constant ache inside, a loneliness, wondering if anyone in the entire world could understand what my life had become?

Over time life moved on. Adam started school early, we enrolled him into a program at a school for deaf children. He was fitted with hearing aids. We learned how to adjust life to make everything fit, and things seemed to get back to normal and we were happy. Over time we had two more beautiful children, perfectly healthy, and though there were constant challenges and responsibilities in the home caring for Adam's needs, we were doing well. Though for me, as a father, there was a constant ache inside, a loneliness, wondering if anyone in the entire world could understand what my life had become?

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I fast-forward my story now to 1997, when my son Matthew was born. We were excited as a family beyond measure to welcome our next child. It was a gray December morning when we were told something was wrong with the baby, and my wife was rushed to the emergency room where doctors spent the next hours, many hours, working with mother and baby to bring about a safe delivery. Matthew was born close to 7:00 am and at first, he seemed like a perfectly healthy, beautiful baby boy. Then I felt the wall in front of me again. He failed his newborn hearing and vision tests. Appointments with doctors started being scheduled before we left the hospital to take him home. A few weeks later I was walking through familiar territory, Matthew was diagnosed with Zellweger's Syndrome, very similar to Infantile Refsum's but far more serious with far more severe consequences. They told us Matthew would probably not live past 6 months of age.

I hit the wall again. Life as I knew it was reduced to a pile of bricks, broken and cracked, that I had to figure out how to rebuild. But I had done it once before, and I was pretty determined I could do it again. There was no one to tell me how to do that, though.

Matthew is now 20 years old. He has outpaced and outperformed every speculation about his life, and he has outlived every prognosis placed over him. Born completely deaf and blind, he now has some functional use of his vision and hearing. He finished high school and graduated with a 4.0. He has written a book about his growing up experiences, and he has composed several pieces of intricate classical-style music. He is an amazing young man, but that is another story for another time and place.
 

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As a father, I probably made every mistake in the book and then some, trying to be dad to my other kids, trying to care for my sons with special needs, trying to be a friend to other fellows, trying to be there for my wife in her needs, trying to participate in church and community, run a business, the whole thing. I know I did a lot of things right but we always seem to focus on the problems, don't we? I had to learn a lot over the years, I had to piece things together and make things function when I had never been prepared for such a life. Are there things I would do differently now? Absolutely. Experience is a fierce and determined teacher.

I realized there were many other men out there dealing with loads heavier than they knew how to carry, starting with a diagnosis and moving forward into the reality of life.

Close to two years ago now I began to evaluate all these life experiences, what I had learned, and asked myself, "What do I do with this?" I realized there were many other men out there dealing with loads heavier than they knew how to carry, starting with a diagnosis and moving forward into the reality of life. As I continued to think about the whole experience, I formed a plan through which I would endeavor to encourage and empower other fathers walking on that same path I had been on for over half my life.

I wanted to start a non-profit organization that could help fathers of children with special needs through life issues such as financial planning and specialized tax structures. I began researching specialists and resources where fathers can turn such as counseling, crisis assistance, grieving, and marriage supports. I began studying how I could coach others through what I had been through, and am still going through. I started planning activities and events that would enable dads and families of children with special needs to spend time together sharing their life experiences with others who totally understand this road.

In early 2016 I started The Adam & Matthew Group 4 Dads, or AMG4D, after my two sons with special needs, who have taught me so much more in life than I will ever be able to give them.

People often say things to me like, "What you've done is amazing, I don't think I could do it." My response is, "So I had a choice?" None of us know what we are capable of achieving until we do it. But any one of us can go so much farther, climb so much higher, and take more laps if we have the support, encouragement and empowerment of friends and those who understand our challenges. And that's where I come in with AMG4D, endeavoring to provide a positive resource to all those who want to share this life with us.

My message to families, and especially dads, is that this experience was not meant to destroy you, it is meant to create you.

As families with special needs members, we represent close to 25% of our population, but we are each as diverse as is the diversity of the disabilities, health issues, and challenges that make up the special needs community. My message to families, and especially dads, is that this experience was not meant to destroy you, it is meant to create you. While you may not live the life you expected, you can live a life that explodes beyond even your wildest ideas.


If you are willing to share your journey in a guest blog post, please contact corporatecommunications@cardinalinnovations.org

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