right-to-die

Last fall there was a ton of news reports about Brittany Maynard, a young woman with terminal brain cancer whose family moved with her to Oregon to support her quest for the right to die. SO MANY WORDS were written in support or defense of her, and in opposition of her, trying to convince her not to take her life.
I do not have a "side" on right to die laws. I do think that regardless of your position (if you have one), it would be eye opening to watch someone suffer for weeks or months and ultimately die. It doesn't go the way you think it's going to go. It frequently doesn't go the way doctors think it's going to go. I'm not just speaking about Eli's final months; people defy medical expectations for better or worse, everyday. I have a theory about that. I believe we know as much about the human body as we do about the universe. Only what we can observe, which isn't much. It's easy to think we know SO MUCH. Modern medicine is fancy and impressive. But it is only good so far as we understand what the problem is and have a way to fix it. There is so much more that we don't understand about the human body in comparison to what we do understand.
Right to die. Right. (Deep breath) I'm glad there were no right to die laws in North Carolina. Of course they are very specific anyway and who knows if we even would have been presented with the decision to humanly end our child's life. Oh wait, except we were.
Some helpful information: We were told to expect Eli's death twice. The second time it went on for days. It was a week of waiting for him to die and praying he wouldn't. When Eli started to do better the doctors were flummoxed, but had renewed hope. When Eli actually did die, no one prepared us for it because no one really knew to expect it. He had beaten the very dismal odds multiple times and he had been doing better, so even though Eli was in a bad way, it just wasn't expected until a couple hours ahead of time.
Okay, so that second time where we took turns laying in the bed with him for a week straight? Multiple times doctors asked us if we wanted to turn the machines off and let nature take its course. Pause. Can I just share that for the past 9 years I thought the hardest decision I would have to make was when it was time to put my DOG down? Now they're asking me to decide if it's time for my KID to go??? (Deep breath) If they turned the machines off, specifically the dialysis machine, Eli would continue to retain more and more water (since he had zero kidney function for the last 3 months), which would eventually affect his breathing and he'd drift off and die, heavily medicated for comfort, of course. In my head I said to the doctors, "That sounds fucking terrible, so you can go jump off a cliff." Out loud I said that we would talk about it. And we did.
When you are deciding whether or not to end a life in a medical situation such as we were, you have to know that you know that you know you are making the right decision. We didn't know that it was the right decision. It didn't seem peaceful or kind, it just seemed fucking terrible for everyone involved. Then again, the current situation was pretty fucking terrible as well. To me, that meant turning off machines wasn't the right decision.
When Eli did die, it was gradual failure of the lungs. He had needed more and more respiratory support, they had turned the settings up higher and higher on the CPAP machine, until they couldn't turn them up anymore. We decided to intubate because again, everyone at least somewhat expected Eli to make it, and really we were buying time for the antibiotics to work on the pneumonia. Once Eli was intubated they had to switch from the ventilator to the oscillator (not a good direction to go), and then they had to keep messing with the settings. Over a period of several hours Eli's vitals continued to decline and they got to the point that they couldn't turn the machine up any higher without blowing a hole in his lungs (which is death, BTW). Eli had plenty of sedation and pain meds during this time and was comfortable. When the doctor finally said there was nothing else they could do and Eli was slipping away, I asked him to give Eli more pain medicine for comfort. If he was going to die, there wasn't going to be any chance that he felt even a twinge of discomfort anymore. He had felt all the pain he would ever feel and was done. At least I could give him that.
Eli's oxygen saturation dropped over a period of time, and once it got below 50% it started affecting his blood pressure, which eventually affected his heart, which gradually stopped beating. How long did it take Eli to die? I don't know, when did he start dying? Umm, maybe a couple hours, I guess.
I hate that Eli died. I hate that we still don't have a real diagnosis and for a lot of his illness and especially the last few months, there was a lot of guessing in his treatment. I fought for his life and his comfort. But if he had to die, I'm glad there was not a damn thing anyone could do about it. I'm glad I didn't turn the machines off and "let nature take its course". I will never wonder if we made the right decisions in his death. I will never wonder, what if we had given him a chance?
There's more to this than just death. I believe that God declares life where sometimes we think no life can be supported. For whatever reason, Eli didn't die the first two times. Even when they completely stopped treating him with his necessary meds and transfusions for several days and told us death was imminent, hours away. We said, "Okay, but he's still talking to us when he wakes up. So we're going to keep holding on. Giving up doesn't feel right." So we kept the machines on. I'm so glad we did.
I may be brought to my knees daily in the grips of grief, but I have no regrets in NOT ending Eli's life when given the choice. God declared life for a time. When the time was over, Eli went peacefully.
Maybe after all this it sounds like I am against right to die laws? No. I can't begin to take a side, because I have been there, more or less. It wasn't right for us in our situation.
I hope you never, ever have to make a decision about a loved one's life.