I am pretty much an ordinary fellow, a few talents and abilities, I've run a business for several years, I enjoy a variety of activities and I've always had a pretty healthy social life. To look at me without knowing me there's really nothing to make you suspect that I am “different.”
However, there is a difference about me, about my life, that separates me from most other fellows I know. I am parent to 2 Special Needs sons.
My work with AMG4D was born out of the experiences I have had as a parent, and the challenges to my life that I have faced, and continue to face, that places me into an unspoken brotherhood of fathers who face these similar challenges in their own circumstances.
The first part of the experience is what I call “The Hit.” Somewhere between the rush of excitement you feel when you learn you are expecting a child to sometime after that child is born, you get the hit of a diagnosis that rocks your world. You are suddenly faced with decisions, emotions and challenges that few people could possibly be prepared for.
I was 23 when my second son was born. I had started a business, built a home, working to develop a positive life for myself and my family. When Adam was born I was filled with exciting thoughts of the future, having 2 sons 18 months apart, brothers who would experience great things of life growing up together. Those first few weeks were awesome, a perfect world or as nearly as it could be at the time. Then Adam had some struggles. He had a convulsion. My wife and my sister rushed him to the hospital where I met them, all of us completely bewildered to understand what was going on. From the local hospital Adam was rushed by ambulance to the University Hospital in Portland. I followed in the car with my oldest son, choking back tears, trying to be strong, wondering what was going to happen.
Adam was put into intensive care and connected to an uncountable number of wires and probes. He was bleeding on his brain and a couple other places. A barrage of questions were directed toward my wife and me as doctors worked to stabilize him. Eight days later we took Adam home, though his condition had improved we were told they did not know what was wrong with him but that it was very likely he would not survive.
It was a hit harder than anything I could possibly imagine. I felt weightless and crushingly heavy at the same time. The doctors said that something was wrong for which they did not have a name, there would be no diagnosis at that time.
I have since then thought of the thousands of young parents who experience exactly what my wife and I did that August day. One sentence from a doctor, one list of symptoms, one unpronounceable diagnosis, your whole world crumbles into a pile of rubble and there you are, left with wondering how to rebuild it, how to get back what has just been ripped out of your dreams, your heart, your family, your life. I call it a “hit” because it is a hit and it hits hard, and it keeps on hitting for a long time. You scream through the channels of your mind looking for a reason, and then you focus your energies on finding a solution, wanting to fix it. Quite often, there are absolutely no answers and no resolutions.
Some time later doctors told us Adam was deaf-blind and mentally retarded. They doubted he might live past age 5. But life went forward as we found teachers and therapists for him. He was fitted with hearing aids and we enrolled him into a school for the deaf. By age 5 we finally had a name for his rare disorder, and while the name gave us a label, it solved nothing. Adam is now an adult, and while disabled he leads an active, exciting life. He has a job, he travels. We found out in his teens that he was misdiagnosed when they said he was mentally retarded, he is actually very bright and finished high school on the honor roll.
It doesn't happen a lot, but at times someone will ask me what I remember most, what it was like. Much of it seems like a blur now. A life pulled in many different directions. It was lonely, it was challenging. It felt like my heart was torn out, stomped on, then shoved back in to see if it still worked. There were good times. We celebrated the day Adam walked down the hall to greet me coming home from work, this after we were told he would never walk. We celebrated his school achievements. Wonderful people came into his life, including the alternative family he lives with today. He is loved, and he loves in return. I can sum it all up by saying, “together, we survived the hit.”
In part 2 I will discuss more of the initial reactions a parent goes through when they receive a diagnosis for their child.