Matters of life and death aren’t always the most important. I sat watching two nurses working on a fragile premature infant trying to get a huge needle into his delicate spine. I didn’t even know this child, but I couldn’t hold back the tears. My son, Benjamin, who had emergency surgery just a few days before, at only two days old, looked like a football player compared to the rest of these residents of the NICU. “How could all these souls” I prayed, “come to these bodies that are so damaged and defective to endure such pain of their own free will?” No sooner had this prayer ascended to heaven when a very comforting message entered my mind and heart. “They knew it would be worth it.” At the same time, I just knew that Benjamin came to serve his family.
Years later in yet another marathon doctor’s appointment I was told by the doctor that my son’s condition was tenuous. I feared for my son’s life if I didn’t obey his orders. This doctor is one of those doctors who I refer to as having a “God complex.” From the first time I met him, he expected me to blindly obey every command he uttered. I was constantly getting lectured for not doing something he had never even told us to do. He sent us to a gastroenterologist who never agreed with his treatment plans and constantly changed the dosages. I would ask him about the contradictions, and he would simply say, “do everything she tells you to do.” Consequently, she overprescribed Benjamin’s digestive enzymes, and caused permanent damage to his intestines. To cover up their mistakes they began to falsify records in Benjamin’s medical files.
Benjamin spent his entire life in and out of hospitals. They would admit him just long enough to get an IV inserted and stabilize the levels of medication in his system. They would then send him home for us to run three weeks or more of IVs and even draw blood for lab work ourselves. During one particular hospitalization when Benjamin was 7 years old, I carefully wrote down all of the orders that we were expected to follow. We had to run the feeding tube at a rate that it would take 10 hours to feed 24 ounces of canned “nutritional supplements”. Of course, it never ran 10 hours straight before Benjamin would have to get up and use the bathroom because this “nutrition” he was being pumped full of was not being digested. Benjamin had Cystic Fibrosis, and he needed to take supplemental enzymes when he ate. He couldn’t take enzymes while he slept. He needed breathing treatments with albuterol every 4 hours, followed by chest percussion therapy that took 30-60 minutes. This couldn’t be done within an hour after eating or running his feeding tube. He got Pulmozyme twice a day, and Tobramycin twice a day. He took digestive enzymes with every meal and snack. He was supposed to consume 3000-5000 calories per day. We were to give him one can of Pulmocare 3 times a day delivered by gravity through the feeding tube. This caused dumping syndrome, which meant the food just went right through him. After a few days of trying to adjust it or slow it down so it wouldn’t go straight through him, we had to stop because nothing helped. He took Omeprazole twice a day, Adeks water soluble vitamins twice a day, Ciprofloxacin twice a day, but not within an hour of milk products. I’m sure I’m forgetting something, but my point in listing all this is to illustrate the fact that all that we were supposed to do would take 26 hours, and we were supposed to do it every day.
While I was working “twenty-six” hours a day, my five other children had less of a mother than they deserved. One of my daughters really struggled as a teenager. She was emotionally insecure, and I remember crying because I couldn’t give her the attention that she craved and do all of the medical garbage that the doctors kept telling us we needed to do to keep Benjamin alive, when in reality a lot of it was damaging him.
During the time that we were responsible for all of these extensive medical treatments at home, I received a revelation in the temple that my daughter would be okay. I was startled by this revelation, because I didn’t know why it came until the next day when she ran away from home. She didn’t return home for three days, and I would have been an emotional wreck that weekend without that sweet tender mercy. I was still concerned, but I knew she would be ok.
Years later, we found that the best healthcare we could get for Benjamin was in Salt Lake City. In hindsight, I’m grateful we didn’t know this earlier, because I know that I would have traveled those eight hours at the expense of caring for my other children, after all, it was a matter of life and death! What could be more important? The Lord knew my weaknesses as a mother and He sent Benjamin with all of his challenges to give my other kids an example of pure love and sacrifice. When they think of him, they will want to be with him forever.
I had learned first-hand through these experiences what Elder Dallin H. Oaks tells us in his opening sentence from his talk “Good, Better, Best”. “Most of us have more things expected of us than we can possibly do.’ Most people would say that matters of life and death are the most important things that we can devote our time doing. I learned that working to keep my son alive was better than almost anything else I could do. There were so many good things that I didn’t have time to do. Elder Oaks quoted President Gordon B. Hinckley saying that he has pleaded that we “work at our responsibility as parents as if everything in life counted on it, because in fact everything in life does count on it.” The phrase “It’s a matter of life and death” needs to leave my vocabulary, and in its place “It’s a matter of eternity.”
