This isn’t about physical strength. It’s about inner strength. The strength to look adversity in the eye, then spit in it and keep going. To keep going despite what pops up in the way.
Mrs. fireman is a nurse. For the last 5 months she has worked for a home health agency. One of her clients is a family whose son has Muscular Distrophy. I had the pleasure of meeting these people today, and all I can say is that they are amazing. These people have a reserve of inner strength that doesn’t quit.
The son is a total care patient who lives at home. He is unable to move anything but his head, and that movement is limited. He breathes via a ventilator. He eats via a G tube. He requires 24 hour care. He used to be able to control his electric wheelchair, but is unable to do even that now. He relies totally on other people to meet his every need. Mom and Dad care for him 16 hours a day, and nursing staff come in from 11 to 7 most nights. Dad has a full time job, serves on the city council, and is a volunteer firefighter/emt. He also volunteers time to assist other special needs patients in the area. Mom keeps the house spotless and provides medical care that would put a lot of prefessionals to shame. She also cares for a 3 year old grandson, from an older child, almost daily.
Mom and Dad rarely get a day off. Never get one together. Some nights, they don’t get a nurse, so one of them must stay with son. They don’t get vacations or long weekends. They don’t get to go out to dinner, or to the mall, or anywhere.
You would think that all this would wear on a person, but these people are totally upbeat all the time. They know there is no hope of recovery for their son, but they remain optimistic and cheerful. They do not ask for pity nor do they accept it. They strive to maintain a quality of life for their son, to make his life have meaning.
Most people would probably do this for their child. But, could most people maintain the positive attitude this family has, while knowing it’s just a matter of a year or so until the son passes on? Despite the load of work they have, they never complain.
They have another son living at home. He is a few years younger than the total care son. He also has Muscular Distrophy. He can’t walk anymore, and doctors say his prognosis is similar to his brother.