Benjamin was born May 22, 1998, a beautiful, red-headed baby boy. I realize that I am biased, being his father, but the truth is anyone who met him talked about how beautiful he is. He was a quiet baby, didn’t wake us up a lot during the night, didn’t complain much during the day, and smiled one of the most beautiful smiles most of the time. During his early years, there were things with him we didn’t understand. For instance, he never crawled on his knees, instead, he would use his elbows to pull him across the floor, we called it his Army crawl because it looked the same as Army guys in the movies would do when they would crawl during battles. He didn’t start talking until he was 12 months old and most confusing for me, he didn’t start walking until 16 months old. It was confusing because he had very muscular-looking legs, especially his calves, but he just couldn’t seem to walk. During his regular checkups, we would ask his pediatrician about this, he said he seemed fine, his legs were muscular, and he was probably a late bloomer and would walk when he was ready to. When he started walking, this advice seemed to be correct. As he grew older, he was clumsy, didn’t run very well, and had difficulty doing simple tasks. I remember when he was a little older, we bought him one of those battery-powered toy motorcycles, and the first time he got on it he ran it into our backyard garage wall. He couldn’t steer it well and had issues using the accelerator and braking. I would mention this on his check-ups and the doctor would tell me that children develop at different levels and that he’s probably just clumsy. Then, my son started to fall when he was walking. I didn’t take him to his doctor right away, because it wasn’t happening a lot, but waited for his next check-up and mentioned this. The doctor asked if I made a big deal about it whenever it would happen, to which I said I did. He said that my son was probably looking for attention. He, the doctor, was a little short with me, which kind of left me feeling like I wasn’t doing a good job at parenting. Shortly after this, my nephew had a procedure done in a Birmingham hospital and we went to visit him. My sister-in-law’s mother was there and she held Benjamin’s hand while we walked up some stairs. He had a very difficult time and she said she felt there might be something serious wrong with him. I told her about my previous conversations with his doctor and she said “ I’d get a different opinion. This doesn’t seem like something a child would do to get attention.”
This was in the late spring of 2005. I took her advice and took Benjamin to a different pediatrician. When the pediatrician asked the reason for our visit, I explained my concern with my son’s issues, the falling, problems walking, and coordination issues. He had my son sit on the floor and stand up. He did a few other coordination tests, had him walk some, and then said he wanted to get a blood test. My son’s CK levels were very high, if I remember correctly, they were somewhere around 11,000. Normal levels are under 200. He said he suspected my son had Duchenne Muscular Dystrophy. At this time I didn’t know what CK levels were or what they meant and had no idea what Duchenne Muscular Dystrophy was. As he began to explain the disease to me, I felt my life had just slipped into one of a parent’s worst nightmares. I was partially right, but in some ways, this disease has also brought experiences in my life that were incredible, even if I didn’t see it at the time.
In this blog, I will talk about the bad times, as well as the many unexpected good things that have occurred from a father’s perspective. As a parent with a child who has extensive health needs, it’s easy to get stuck, and hyper-focused on the bad, causing you to miss out on the good when it happens. I will also discuss my health issues, as well as my wife’s throughout this blog and discuss my handling of these issues, as well as talk about how I would do some things differently. I have the advantage of almost two decades of experience with all this, so I hope that what I discuss will have something of interest and value to others.