I spent Gabriel’s last night in the hospital at his side, reading him every storybook I had brought and telling him stories about the grandmas and grandpas (among others) that were waiting for him. I wound up the music box giraffe more times than I could keep track of and played his favorite selections from his puppy and soother. I was also on the lookout for any sign from Gabe that we had made the wrong decision to remove him from the ventilator. I wanted something – anything – that I could take back to his doctors and nurses that would justify giving him just a little more time to turn things around and maybe come back to us. Even though we had already been told that, from a medical standpoint, attempting any further procedures would be the equivalent of doing things to him instead of for him and we knew that he had lost all movement on his left side and that his brain was bleeding in multiple places and that there was a blood clot bouncing around in the non-functioning left ventricle of his heart, and…and…and… I clung to the hope that it could all change for the better just as quickly as it had all gone so bad. One of our regular nurses came along in the middle of the night, realized that I was saying goodbye to Gabe and offered to let me hold him.
To this day, I can’t believe that I turned her down – all because I didn’t want Chuck or my mom to be upset that I had gotten to hold Gabriel while they were napping. The decision still haunts me. What was I thinking?!? I had missed out on the last three days that my son was truly alive (before his heart surgery) – of course I wanted to hold him and make him better and never let him go again!! Once in a while, just when I think I’ve reached my lowest point, the never-ending mental soundtrack of memories sung by the gorilla of grief likes to kick/punch/stomp me further into oblivion by reminding me YOU SAID NO! YOU SAID NO TO HOLDING YOUR DYING BABY! WHAT KIND OF A MOMMA SAYS NO TO HOLDING HER DYING BABY?!?
Eventually it was time for shift change and that meant the doctors would be making rounds and expecting a decision from us. I stood at the door to Gabe’s room and listened to them talk about all the usual stuff – his BP, heartrate, oxygen saturation, any test results – then it came time to talk about what the plan was for Gabe’s care that day. Everyone in the group turned to one of the residents as she started chirping away about all the wonderful things they were going to do to continue working toward the goal of healing Gabe so that we could take him home. I was speechless and growing angrier by the minute. Didn’t any of her colleagues talk to her the way they had talked to us about Gabe? Didn’t she read his chart ahead of time or do her homework? Why didn’t she know what we had been told about our son’s condition? Why didn’t she know that, in this room directly across from the nurses station where they put the most critical patients who have the least chance of survival, we were being asked to make a life or death decision for our four month old son? It took everything I had to hold my tongue until she was done speaking. When she finished, I informed the group that while I didn’t know where that resident had gotten her information about our son’s condition, Chuck and I had decided that it was time to remove Gabriel from the ventilator. We never saw that resident again.
Everything moved so quickly once I spoke those words. It was as if someone had opened a trapdoor that led into an infinite black hole underneath us and we were falling…falling…falling…out of control, spinning, rolling, colliding, grasping at the nothingness that surrounded us in the hopes of grabbing hold of something anything to make it stop, nothing can be done to change the direction, feeling like we’ve been here and done this before, yet not knowing what to do next… Someone immediately stuck a teddy bear magnet to the door frame. That was their ‘signal’ to the rest of the staff, letting them know what was going on in our room without having to say it around the other families. As arrangements were being made to have the priest come in for last rites, Gabriel was being placed in my arms for the last time. To the very end, I willed him to wake up, open his eyes, breathe on his own, be okay, show the doctors they were wrong – all he needed was to be held by his momma. If I concentrate on Gabe and believe and have faith and think the good thoughts hard enough, it will happen. Right? A son for a son and Christmas miracles and all that??
Just breathe, baby. Please?
Sitting through the last rites was awful and made me angry – my son was four months old, what kind of sins could he possibly have committed that he needed to be absolved for?? – but it was something that Chuck wanted for Gabriel. When the priest was done, I traded chairs with Chuck and handed Gabriel to him. I wish I would have asked for us to have some more time alone as a family. We hadn’t held Gabe for two weeks and while I’m grateful for the time we had to say goodbye, no amount of time would have ever been long enough to make up for the lost time and I would have liked to have a longer last time. Instead, the freefall continued. Everything was happening so fast and so slow at the same time and there was nothing to hold on to and no way to brace for impact and no way to know when this freefall was going to end. With Gabriel safely and securely in Chuck’s arms again, the ventilator tube was removed.
Gabriel took gasping breaths on his own for most of the last hour of his life, but he didn’t breathe. We reassured him that we loved him and it was okay for him to go. Once the doctor declared him dead, Chuck handed Gabe’s body to me and left the room. I sat in the rocking chair and had no idea what to do next. The nurse was busy unplugging tubes and wires one minute, and the next she was urging me up and out of the chair, saying Gabe’s body needed to be bathed before rigor mortis set in. She went on to tell me that she had had to make a similar decision to remove life support for her son and that she thought we had done the right thing for Gabe. I was in such a fog at the time, I really didn’t know what to say to her. She really was very kind. I was trying to remain calm, cool, and collected at a time when all I wanted to do was be “that mom” and cry and scream and wail and carry on and make everyone around me hurt and feel as miserable as I did. When we were done bathing Gabe’s body, she diapered him and asked if we had any special outfits we’d like to dress him in. We didn’t, so she swaddled his body in a hospital blanket and promised me that she would carry his body down to the morgue herself. I asked if I could go with her and carry his body, but she said that wasn’t allowed. She asked if I wanted to take any last pictures and I declined. I told her that wasn’t my son laying there, that was just his body. What made Gabe who he was had been gone long before this point. I refused to recognize the body laying before me as my son because Gabriel was – and always will be – so much more than the defective shell that ever-so-briefly housed his beautiful, precious, innocent soul.
As I walked through the automatic doors of the CICU [cardiac intensive care unit] for the last time, the hallway appeared to stretch itself out before me, becoming endless. I stood up a little straighter and set out to make that endless walk through the hospital and across the street to the safety of our room without completely losing it in front of everyone along the way. Little did I know then what good practice that was going be for my new future.
* * * *
It has taken me four years to tell you the story of Gabriel’s last day. I remember every moment of his final two weeks in the hospital – and especially his death – as if it just happened. His death literally took my words away and society reinforced my silence as a condition of being allowed into the land of the living. After all, the grieving are so much easier to deal with when they keep their sorrow to themselves. I was reminded of that by a relative on Christmas Day this year. His boisterous “Merry Christmas!” greeting to me was met with as much of a smile as I could muster and I said “Something like that. Thanks, same to you.” He quickly responded “Well, this is a happy holiday for everyone else.” I sarcastically thanked him for that friendly reminder and went on to endure being a spectator to the festivities (again) and being reminded at every turn who was missing (still). Merry Christmas and Happy New Year indeed.