Death Enroute

Returning to San Antonio is somewhat of a blur, but I’m not really sure why. I was worried to some degree of what was going to happen when I presented myself back home, and also worried about Sean’s condition. If you remember from the previous story it took me over two weeks to get to New York from Texas, but the return trip only took me four days.

Let me give you a little background information before I continue with the details of that trip.  My childhood was pretty much normal, as normal as a family element can be. There were five boys, two older than me and two who were younger than me.  My Pops was a very intelligent guy and in the Air Force where he retired after 25 years. He had a short temper and battled with alcohol which he did overcome later in life. My mother was a warrior in the early years, but towards the end of her life she was exhausted and showed some serious signs of paranoia. My brother Michael was born in 1955 and was the oldest. He deteriorated from about age 3 until his death at age 17 from Duchenne Muscular Dystrophy (DMD). Patrick was born in 1957 and was the second oldest.  He died in 1958 when he was 19 months old after he was accidently strangled by a Venetian blind cord. At that point I became the oldest living son. Sean followed after me.  He also had DMD which in time took his life at the age of 14. Tim was the baby and was an overall blessing to our mom until he reached his teens and decided to be like me when he came to that fork in the road and travel the bumpy one with no railing. Tim and I were perfectly healthy with no signs of any muscular disease whatsoever.

Duchenne Muscular Dystrophy is a form of muscular dystrophy. It worsens quickly. The condition most often affects boys due to the way the disease is inherited. The sons of women who are carriers of the disease (women with a defective gene, but no symptoms themselves) each have a 50% chance of having the disease. The daughters each have a 50% chance of being carriers. Very rarely, a female can be affected by the disease. There is no known cure for DMD. Treatment aims to control symptoms to improve quality of life. DMD leads to progressively worsening disability with death often occurring by age 25, typically from lung disorders.^[1]

Keep in mind that in the 1950s and 60’s there was very little known about DMD and what would be the outcome much less what to expect along the way.

So back to the trip.  I was now 16 years old and well let’s just say I had matured from my adventures and living in a different part of the country. I found myself camped out in the woods across the street from my parent’s home just looking for the inner strength to make an appearance. I was probably hoping I would be spotted to speed up the introduction but after 24 hours it was time.

Knock. Knock.  “Who’s there?” “It’s your boy, your handsome boy.” Well, that’s not exactly how this went but to my surprise there really wasn’t much along the lines of fireworks. My mother was very emotional with acceptance and love.  Pops … not so much, but he was being civil. He did allow me to stay with the understanding that I would be expected to help paint the exterior of the house to in a sense pay my way, oh yeah, and go to school.

Sean was battling pneumonia again and had lost an amazing amount of weight. He couldn’t have weighed more than 65 pounds and his body was showing all the signs of deterioration.  His spine was curved and his muscles were non-existent.  What I noticed the most was that he had lost his spunk, as he was always quick-witted and never afraid to say whatever happened to hit his lips way before thinking about what he was saying. I mean this is the same kid who once found himself in trouble with my Pops and he looked old Pops right in the eye and said “What you gonna do hit a cripple?”  His favorite saying was “You son of a bitch!” Remember, he was only 14 and I had been gone for almost a year, so this is all stuff I remember from his earlier years.

Sean had pneumonia many times before and always bounced back.  The lungs are another muscle and at the end of the day that is what muscular dystrophy attacks, all the muscles.  While many of our muscles are visible, the lungs and heart aren’t and so we tend to forget they are major affected muscles. The spring was always difficult with all the new growth and pollen which played a role in triggering allergies which would many times build yet again into pneumonia.

May 26^th was a Wednesday and Sean had a lot of congestion and had been having trouble breathing.  He was not doing well, so I had stayed home from school to help my mom as she was up most of the night with him. As the day progressed, he had more and more trouble breathing which prompted mom to load him up in the car and take him to the base hospital where we had been so many times in the past. As we traveled Sean slumped over into my lap and just cried which only made the congestion worse. Knowing that he needed to not constrict his breathing, I sat him back up but this only upset him and after he uttered a few choice words, I let him lie in my lap.  It was amazing to me that he seemed so comforted in that position. My mom asked how he was doing and I responded that he seemed to be doing better and was not making noises anymore and was probably sleeping. She pulled right up into the ambulance entrance and the nurses and doctor came out to the car reached in and asked how he was doing. Again, I said that I thought he was asleep. They listened to his chest with one of those stethoscopes and at that point the pace of the whole process went to a level that scared me as I had no idea what all the rush was for. They scooped Sean up and ran with him into the hospital. All I really remember is me sitting in the back seat of the car parked in the ambulance bay all alone for what seemed a very long time, car doors still open, not knowing what to do. At some point, someone from the hospital came out, moved the car to a parking spot and motioned me to get out as he closed the doors. Off we went to be with my mom and Sean. Well, it didn’t even hit me until they took me to my mom who was crying in a room by herself, not a medical room it was just a small office-type room, thinking why would my mom not be with Sean.

1. https://www.mountsinai.org/health-library/diseases-conditions/duchenne-muscular-dystrophy