It bothered me to think, that Dear Son might die when I wasn’t there. After eighteen years, and being with him on every hospital visit, it was hard to think I wouldn’t be there at the end. I had loved him and cared for him deeply his entire life. I had always assumed I would be there at the end. I had never thought for a moment, that I wouldn’t be there to say good-bye. It had never even entered my head. And yet, that night, it was a real possibility. It took everything I had to leave. I had never felt such pain.
I must say I was almost angry at that thought, although angry isn’t really the right word. I think it was just plain unimaginable that his life would end any other way than with me by his side. It was like watching a really good movie and then suddenly, it had a crappy ending. It was the kind where you would ask yourself why they put all of the time and energy into the movie only to have it end so poorly.
I remembered earlier in the hospitalization when he was on the vent. He was lying in the hospital bed, unconscious, tubing taped to his mouth. For the first time, I thought about it not working out. I mean, it almost didn’t work out in 2006, when he nearly died on Mother’s Day. He was on the vent then and without a blood transfusion, that would have been it. But this time, wow, I thought about what might happen if he died.
Dad was there back then, in 2006, when they removed the vent tubing. He said it was really hard to watch. The doctors and staff all stood around Dear Son as they removed the tubing, then they basically stood back and waited for him to gasp for his breath, hoping he’d breathe again. He said he never wanted to watch that again. I left the room for that kind of stuff. I know I can’t watch that.
But this time in the ICU, that night he was on the vent, I thought about that moment. I thought, what if it didn’t work out? What if I didn’t get to say good-bye? What if Dear Son suffered? What if he looked around for his Mommy and she wasn’t there? What good would it have been if I had done everything else in his life if I wasn’t there at the end when he needed me the most? The guilt of leaving the hospital that night was going to kill me and yet, I knew if that if suctioning was required or he would die, then I would have to leave.
I remember asking the nurse for a few minutes to tell Dear Son good-bye. He couldn’t even close the door and give me a few minutes of privacy. I’ll never forget that. His name was Richard. So much for compassion. I’ll also remember the look in Dear Son’s eyes, when I told him I couldn’t stay. I told him I couldn’t stay when they wanted to put that tube up his nose, because I can’t watch him in pain. I told him his Daddy would be with him and that I was sorry. I told him that they thought that would help him. I told him I loved him then kissed him on his cheek. I’ll never forget the look on his face when I told him that. As sick as he was, suddenly his eyes opened wide, as if someone had just tossed cold water on his face and he was suddenly awake. He had this terrified look on his face. I knew he didn’t want me to leave. But I had to. I felt terrible.
Fortunately, he recovered, or rather, is still recovering. That night though, leaving for the suctioning, made me think about the ending. It was all I could think about as I drove home. Coming home to an empty apartment, and seeing his empty bed, made me think about what it would be like if things didn’t work out. It was awfully quiet.
If there were two things that I knew for sure, up to this point, was that I would never do a “Do Not Resusitate” order and I would never do a trach. The first one, because I would feel like a traitor to Dear Son. Granted, I am pro-life but aside from that, I could never do that order because I would feel like it would be a lie. I mean, how could I possibly do everything I can for him his entire life and then choose at the end, not to do everything to save him. I couldn’t fathom that. And yes, I know that some people don’t view it that way but this is my son. I am speaking only for myself.
As for the trach, well, I’d never do that to him. I mean, here is a young man who lived his entire life wanting to run and do things like other boys. He lived his entire life as an active boy stuck in a disabled boy’s body. To cut a hole in his throat, I think, would send him over the edge. It would totally break his spirit. I don’t think he could handle that. I also think it’s an easy answer sometimes for physicians to remove body parts; it’s a whole different ballgame to live with it. I learned that with the g-tube. It took me two years to get over the fact that he could never eat again. I still despise that thing.
The night in the ICU when he lie on the vent, challenged that belief for the first time. I thought about what might happen if it didn’t work out. What if they removed the vent, with the doctors and everyone standing around, and he gasped, suffered and then died. How could I help him? And when would I get to say good-bye? He’d be dead by then and they’d leave the room and take him away. And even if they let me talk to him, he’d be dead. There wouldn’t have been any mother there helping him at the end, holding his hand, kissing his cheek or looking in his eyes telling him I loved him. And how many times would I replay that ending over the rest of my life?
But would this be for me or for him? How important is it to say good-bye?
I thought about Dear Son a lot that night and when I went home. I also thought about it some more after we got out of the hospital. When things weren’t going well at home, and I thought death was imminent, I thought, well, if I call 911 or go to the hospital, we may have to do this again. Am I ready to vent him again even though he was just vented ten days ago? If so, how many times in his life am I willing to do that? Will I vent him and make him go through every life saving effort until I’ve got every last drop of life out of him? What is the right answer?
I pulled away and tried to take myself out of the equation. I tried to look at what would be best for Dear Son. It was hard though, knowing what would be best for him. In the end, I am just a mother who loves her son. I don’t want to have to make these decisions. I can’t ever sign that “Do Not Resusitate” but how many times am I willing to vent him?
I know for myself, that I never want to be vented. Not once, not ever. I may not even have trouble signing a DNR for myself, since I don’t ever want to step foot in a hospital again after all of these years. But I don’t like being in the position to have to make these decisions for someone else. And especially not for my Dear Son.
As I thought about this issue some more, I realized that what I wanted was peace. I wanted the ending to be peaceful and loving. I want to be able to say good-bye. I want to look in his eyes, tell him I love him, tell him what a wonderful kid he was and support him in his death. I wanted to hold him, to keep him from suffering. I wanted death to be loving, as was his life. I decided then to think about what would be the ideal for him and ideal for me.
In the end, I thought that the ideal situation was for him to die at home with me, holding his hand, looking in his eyes and telling him I love him. Then I thought about the next best, to have him die in his sleep. In any case, I’d want him to die without any pain or suffering.
I also thought about the worst case scenarios. That he would die alone in the hospital with no one there. Or that he might choke on his vomit and die or die gasping for air as they removed the tube, looking right at me for him to help him. Pretty much, all of the worst case scenarios involved pain and suffering and me not there to help him.
Essentially, I would want his death to be a reflection of his life-that he would know all of the love that I had for him and that other people had for him. Isn’t that what we all want at the end, to know that we are loved, to not die in pain and to have people we love around us?
I haven’t made any decisions yet, but just thinking about what would be an ideal death versus signing a “Do Not Resusitate” helped. Shortly thereafter, I had to take him back to the emergency room, just three days after we were discharged. When I got there, they asked me all of the questions again: “Did I want to save him at all costs? Did I understand that meant venting him if needed, etc.?” I said "yes" to all of those questions once again. It was too soon though to have him back at the hospital. I wondered how many times they were going to ask me that again. I mean, how do you know when to save him and when it is too much for him?
I found myself longing for the days past, when people just died instead of having to agonize over these decisions. I am just a regular mother who loves her child. I don’t ever want to make any of these decisions. I just want my son to live, to be happy and feel loved. And that smile, yes, I want to see that smile. I want to see it again and again and again.