Life

I had a birthday recently. On that day, we met with our pediatrician, geneticist, and a pediatric intensive care doctor to discuss what to do on the day of Macayla’s death. This may sound morbid or strange, and that would be because it is morbid and strange! The discussion itself is not the morbid and strange part, but it is morbid that we even have to have that discussion. It is strange that on the day my family was thinking about the day I was born, we had to begin thinking about the day Macayla would die. But, it is a necessary and healthy thing to do for our family. Macayla’s disease will kill her. In her case, she may not come through a bout of pneumonia or a car wreck like she would have if she were not affected by Battens disease. The most likely cause of death will be from a pulmonary arrest as the airway becomes floppy because her muscles around her airway lose tone. It can be brought on by a major seizure as well. Nevertheless, unless she is healed on this side of heaven, she will die. But the same is true for us all. The decision we have to make for Macayla is to what degree we would intervene when her body begins to fail. If she were to have pulmonary arrest, would we intubate (insert a tube through the mouth to the lungs to help air flow)? Would we place a trach tube in her neck? Once we start those interventions, how long will we continue them? The outcome of our meeting with some special and caring doctors was that we are more educated on when and how those interventions are done and we are forming our decision now. I would like to encourage all families to think through those decisions now, even if you are healthy. It prepares you and your loved ones to respond to tragedy. It doesn’t make the tragedy any easier, but it at least prepares us on some levels. It also puts decisions in place so that if something happened to Jennifer and me, her parents would have decisions made for them as they take over Macayla’s care. The doctors told us that if we chose not to intervene with intubation or a tracheotomy that it will be difficult to go through those last moments with Macayla as she struggles for air. If we chose to intervene fully for as long as possible, that it makes those decisions for us, but it won’t change the disease or the outcome. It will only delay it. We’ve already intervened in that we placed a feeding tube to provide her nutrition, but this pales in comparison to the other interventions we must consider.
We know that Macayla will be healed. It may be here with us or it may be with Christ in heaven, but she will be healed. There are times when technology is a wonderful blessing that saves lives and provides quality of life for many, but I don’t believe that we can always hold to the idea that we must use technology to delay death. We may have the means to do so, but is that why we should do it? There is one being in this universe that has the means to keep someone alive. God could not only keep Macayla alive, but He could completely reverse the disease itself. It makes me realize that God has the means to prevent death, but He chooses not to very often…or does He? God is not evil and neither is a family that may decide in a situation like ours to not intervene. Likewise, God can heal and it is good for a family if they decide to do full interventions. At the heart of this decision is understanding reality. If we know that reality involves much more than what we can see with our eyes and that life is more than breathing oxygen and pumping blood, then we are more equipped to make decisions that promote life. Life is also in a realm that we cannot see with our eyes. This is not to say that we shouldn’t treat people like Macayla and their symptoms. This is not to promote assisted suicide. But we must be aware that Macayla’s life does not end with her last heartbeat. It will in fact take a giant leap forward. God may call us to intervene more than we would think for a special reason, or He may call us to allow the disease to take its natural course. Either way, I fall back on the promise that He made to me before our diagnosis: “Macayla will die, but I’ve got her no matter what.”