I don’t remember much about being home in Lewisville for that 36 hours (or whatever it was) between Saturday afternoon and early Monday morning. I hung out with a friend Saturday night, and went to church on Sunday. I had found out at church on Sunday morning that Holly’s pupils stopped responding to light stimulation. It was also Sunday that my parents had decided, after agonizing conversation, advisement and prayer, to put a DNR order on Holly’s chart.
Do Not Resuscitate. Reality was sinking in more and more with every phone call, every update. I was anxious to just hurry and get back as soon as possible. I got back just in time to wait. Wait for one doctor to talk to another, wait for one test to confirm another, wait for Holly to “show” us that she wasn’t coming back. I sat in Holly’s room with her almost all day on Monday. I watched and studied and read and memorized those monitors like it was ME that her life depended on.
At one point I found myself breathing in the same rhythm and labored motion that the breathing machine was doing for her. After about a minute of doing this subconsciously, I was exhausted. I immediately felt so bad for her… her body must have been WORN OUT. I couldn’t imagine a machine doing that to me for 5 days. My brain knew that her brain wasn’t conscious of any pain or exhaustion, but my heart felt like her poor body had to have been aware of it. That was all it took. Once I felt like she was in even an ounce of discomfort, I started talking to her, putting lotion on her fingers where the skin was starting to crack, wiping off her mouth where drool was running down her chin from all the tubes, fixing her hair, helping the nurses change her sheets or fluff her pillows…. just anything. It was like that one experience where my breathing tried to mirror hers for just a single minute personified her all over again.
Monday night was the first time that I remember us discussing the funeral. And it SHATTERED me. It was almost like my brain would only let me go SO far. I knew that she was unconscious. I knew that she would never wake up again. I knew that without life support, she would not survive long. I knew that – what we originally thought was going to be – the long haul was now a precarious situation that changed every few minutes. I knew that my parents NEVER would have made the decision to sign a DNR if they had any inkling of hope, any trace of a reason to believe that Holly could come back to her normal quality of life. But there was none. Every time we hit a milestone, it was one of marked regression, signs that her body was shutting down. So my brain recognized all of that, and accepted it. But when my mom, through sobs and tears, asked me where I thought we should have the funeral… I literally thought my heart was going to explode right there in my chest. I couldn’t accept it. We are talking about funerals and burials for my sister? No…. surely not.
This was another one of those “worsts.” At this point, we still didn’t even have a definite day/time that we would be terminating the life support, but here we all were, sitting on the window sill in the hallway the next wing over from the ICU, talking about this. I had to sit there like a grown up, like the soon-to-be oldest child, and have a conversation with my parents about where we thought would be the best place for the funeral and the burial. The only way my brain knew how to deal with this (and it stayed this way for the next week or so) was to go into “business mode.” To reduce my sister’s final hours, death and memorial service to facts, and figures, and compromises, and “what works best’s”, etc. We finally decided to have her funeral service and burial in Breckenridge – the only real “home” she ever knew and loved.
(I’ve been putting off writing this part for several days, and the whole first part of this blog feels like rambling to me, because I’ve been stalling. I need to write about Tuesday …. I know I need to.)
Tuesday morning we woke up, got dressed and went straight to the hospital. We all hardly-ate small breakfasts in the cafeteria and went straight upstairs to be there when the unit opened. We had been told on Monday morning that one of the last tests to be done was that the head of Neurology was going to come and examine her reflexes, functionality, review her EEG, vitals, and whatever else they look at to help determine a person’s prognosis, or lack thereof. I remember that we were all scattered all over the place when a nurse came and found me. She said that the neuro doctor had completed his exam and wanted to speak to Holly’s family. I almost broke into a sprint to find my mom and dad. One was on the phone and the other was in the waiting room; we all hurried back to Holly’s unit to meet with the doctor. He moved us all into an empty room and said that he had determined that Holly was officially brain-dead on every level except the part of the brain that controls heart beat, breathing, and other autonomic responses.
To make a long story short, he told us that every part of her brain that made her… her… was gone. She would never laugh or tell a joke again. She would never play a prank on my dad or plan a surprise for my mom again. She would never comfort someone when they were sick again. The parts of Holly that essentially comprised her were all deprived of oxygen, ceasing to function anymore. Almost immediately, her primary care doctor, the one in charge of the whole ICU, came and brought us into the conference room. There we sat – the doctor and his interns, our nurses, my parents, my grandparents, and me – around this table discussing when to end Holly’s life. I will never forget, at one point, the doctor looked at my dad with tears in his eyes and said “I know you just want to be a good dad. I would not let you make a wrong decision. You are doing what’s best for Holly because you believe in a better place than this.” I will never forget that man as long as I live.
At this point it was about 11am and ultimately, we had decided to terminate the life support at around 3pm. 4 hours. We had 4 hours to come to grips with what was about to happen. Holly had 4 hours left to labor with the tubes and wires and needles. 4 hours left out of her short 30 years of life. And yet for some reason, my mom and grandma and I ……. went to pick out Holly’s funeral clothes and a picture frame to put her photo in. Thinking about it now, it seems ridiculous that we left. I mean it literally sounds like the stupidest, most shallow and unimportant thing that we could have done. But at the time … I don’t know. It just seemed… like … what we were supposed to do, for some reason. I think the 5 or 6 days of waiting and sitting had gotten to everyone because looking back, I don’t know that any one of the 3 of us would have re-made that decision the same way. Although, it would have been GUT-WRENCHING to sit at her bedside and just watch her numbered breaths go in and out. Either way… that’s what we did. We returned to the hospital after trips to Wal-mart, Cato, and Church’s Chicken at about 1:30 or 2. We stopped by the hospital gift shop to get a card and some flowers for the AMAZING nursing staff in the ICU.
We got back up there and there was this anxiety… this palpable nervousness that everyone had. It was like we collectively were all feeling the same thing. “I DON’T KNOW HOW TO DO THIS!” I don’t know how to watch her die. I don’t know how to watch them watch her die. I can’t bear it. It was literally like we were all prisoners awaiting certain punishment, and Time was the warden FORCING us to move on ahead. We fought it every step of the way. But soon enough … it was 3pm. Some dear friends from Breckenridge had arrived at the hospital right then (without knowing what we were about to do). It was literally like God sent us two angels – not to make this any easier, but to help us carry this ENORMOUS burden away from the hospital and on to the next phase. It was like we had too much “stuff” to fit in the 2 cars that were there, and God sent them to us to help us move it all back. Bev and Lee are close friends of my family, and have been for years… but that day they became family to me. They always will be now.
3:10pm. My grandma tells us that she is going to wait in the waiting area with Bev and Lee instead of being in the room. Everyone completely understands, and my dad even encourages my mom and I that if it will be too hard for us, we can go too. We both stay. The nurses finally come in and tell us that they will have us wait in the next room while they remove the life support, and “get her cleaned up a bit.”
As the 4 of us (mom, dad, granddad and me) go into the next room, we are all completely silent except for the tears and quiet sobs coming every once in a while from my mom. I feel almost … numb? Maybe that’s the word. Probably more like SCARED to DEATH. I have never been in the room with someone when they died; I have never witnessed that first hand. But here I was, about to become a member of that club with my own sister. I couldn’t really cry, or speak…. I just remember staring a lot. We were only in that other room for a few minutes but it was long enough for my dad to do this: He got down on his knees in front of where my mom was sitting and looked her dead in the eyes. He said “Rob, 25 years ago I promised that man (pointing at her dad) that I would stick by you for better or for worse. And this is about as ‘worse’ as it gets. But I wouldn’t want anyone else by my side to do this.” I don’t even know if he’ll even remember saying that if he reads this someday. But I will NEVER forget that, as long as I live. Even in the midst of all of this HORRIFIC pain and agony, that’s what he says to her? What AMAZING role models I have! This situation (and many others that my family has endured) would have torn a lot of marriages completely apart, and right as they are about to go watch their daughter die, my parents basically re-commit themselves to each other, right there in the hospital.
Then the nurse knocks on the door, and tells us to come back to Holly’s room. Another “worst.” I know what’s coming, or at least I think I do. As much as one can prepare themselves for this, that’s what I did. But I did a piss-poor job of it, for lack of a better term. My chest is literally filled with all the same emotion and anxiety as I sit here and type this as it was that day. My palms are clammy and my knees won’t stop shaking. I keep trying to swallow a metaphorical lump in my throat. Not only did I not know how to do it then… apparently I don’t know how to acknowledge it now…. We all filed back into Holly’s room. Her face, which had been puffy, swollen and red for days because of her blood pressure and fevers, was a weird shade of whiteish-blue already. It was skinnier. No more puffiness, no more swelling. She LOOKED sick, for the first time that whole week. She had been looking like someone who had just got in from running a marathon. Pink cheeks, panting (with the machines)… but not anymore. She was deathly still and her face already looked like its lifeblood was gone. I think I saw her chest rise and fall maybe once or twice in the …. however long… we sat in there just all staring at her. I didn’t even look at anyone else; I couldn’t. I just stared at her …. Til the very end. Finally, a doctor came in and checked the reflexes on the bottom of her feet, checked her pupils and took her pulse. She looked up at the clock and whispered to the nurse in the doorway, “3:33pm.”
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