Nurse Learns How To Orchestrate A Death

This season of 2 Lives is sponsored by the Women’s Foundation for the State of Arizona. Learn more at womengiving.org.

To learn more about Project 660 check out Jessica Diefenbach’s site.

TW: A description of a traumatic incident in this episode may be upsetting to listeners.

One day when Jessica Diefenbach was 13 years old her parents showed up at school, pulled her out of class, and rushed her to the small town where her grandfather lived a couple hours away.

And I don't even remember if they used the word, we think he's died or he could have died. ‘He's had a horrible heart attack and he's in the hospital.’ And then when we got to the hospital, I, you know, gathered through everyone's reactions that he had definitely died. 

Jessica says this was something she would learn from the adults in her life: how to avoid and numb her feelings. But later that day when they went to the mortuary, Jessica felt compelled to be near her grandfather. So she followed her instincts.

I saw his body and it was the first time that I'd ever touched a dead person. And so that which is really interesting that I would want to, I think, as a 13 year old. And so maybe something intuitively told me that maybe I would need this later in life, and I certainly did. But I did I did touch him and say goodbye. 

He was lying on a gurney and Jessica reached out to hold his hand.

In order for us to believe that death is true I think that every sense in our body needs to be saturated with the experience. Because when you love somebody and they've died, you don't believe it. And so my thought is I needed to feel the warm leave his body and feel the cold. So I could believe that this was true. 

This is a story about how Jessica learned to come to terms with death, in her own way. 

This is 2 Lives. I’m Laurel Morales.

Growing up in Flagstaff, Arizona, Jessica was independent. She didn’t let anyone or anything get in her way.  

I was fierce, stubborn, didn’t trust a lot of people, living life loudly, joyfully, taking chances. 

When she was a teenager she even got a pet mule. 

…and his name was Macho. Then all of a sudden he defined me. So it was like me and Macho hanging out in the woods for four hours a day.

She went to school to become a cardiothoracic surgeon. But when she discovered she was pregnant she switched to the shorter nursing program.

When I had the thoughts of being a cardiothoracic surgeon, I thought, Well, maybe I'll never be a mom. Maybe I'll just be a surgeon…But then when I got pregnant with Michael. I think I almost viewed it as like a nuisance because I had to quit my life path that I had set up in my mind. And then I had them and it was just right. 

She got married and had two kids Michael and Megan, all while going to college to become a nurse. She was busy and in a way, was taking it all for granted.

I just existed in the realm of unconsciousness like I had for my whole life….You're just coasting through completely unconscious. Nothing bad is going to happen to you because that only happens on television.

They hadn’t planned on having anymore children, so they gave away all the baby clothes and equipment. But right before Jessica’s graduation they found out they were going to have a third baby. 

At this point Jessica and the family were living in Flagstaff. That’s where she started her first nursing job pregnant … 

Looking back Jessica describes herself as a bad nurse in her first years on the job.

I was really really a horrible nurse…

She recalled one time she was assisting a case where a patient had been shot.

We had a gunshot wound to the head. We needed to do a craniotomy to save his life …And the neurosurgeon looks and me and says, ’Jes, can you just please tell family we’re doing everything we can but it’s not looking good.’ So judgemental Jessica goes down to the waiting room. I was expecting to see maybe a neck tattoo’d girlfriend, maybe some more gang members… and thirty members of his family stood up. Mom and grandma came up to me and I said ‘well we’re doing everything we can but it’s not looking good.’ Grandma dropped to her knees and started crying and mom stared at me in disbelief.

Jessica never forgot the look on that mom’s face. But it didn’t change the way she cared for her patients… not yet anyway. Jessica says she was still on autopilot. 

On June 12, 2014 she went to her regular prenatal checkup.

I went to the O.B. doctor at 36 weeks pregnant, and she was like, ‘okay, you're going to have a baby right now.’ And I was like, ‘wait, timeout. Would you mind if I ran to Target real quick? I just need to buy a car seat.’ I think she was like, ‘hmm, you're going to have a baby now.’ 

The doctor told Jessica that the baby was out of amniotic fluid and needed to be delivered immediately or he would not make it. 

My placenta was giving up. She said if I would have come in one day later, we would have had a very different conversation. 

But Jessica’s baby arrived into the world thriving. And they named him Mason.

I was just relieved that he was alive and he was crying and he was breathing and he was alive. 

From the very beginning Mason loved being outdoors.

He was constantly, constantly, constantly wanted to go outside at like 2:00 in the morning 4:00 in the morning… He woke up four times a night. And in the middle of the night he would say he wanted to go outside. I was like, baby, we can't go outside right now. It's really cold and it's dark and we're not going to go outside. …He loved his siblings so much he would wake up in the morning and he shared a room with Mikey, who was seven at the time He'd wake up in the morning. The first thing he would do is just scream. 

Despite the multiple times Mason would wake up in the night, Jessica says she surprised herself at how calm she would be.

I just think he knew on a soul level … he knew that I was going to need him to wake up four times a night. So I knew that I spent as much time possible with him. And it’s interesting, I never got mad. And I can't admit that with all of my other children, I never got like, walked in and frustrated like, Why are you awake for the third or fourth time? I would walk in and I would sing them back to sleep and I would kiss him on the forehead and leave. But I never got angry. And I'm really proud of myself because I didn't I think I also knew and I saw a level that maybe this was going to be short, not on a conscious level because I was unconscious, but on a soul level. I think I knew that I was going to need to embrace every second with this baby. 

One day Jessica came home from work with the flu.

I had just thrown up in the bathroom and Mason was in my bed and I come back and I lit the candles because it stunk so bad. And so I had lit the candles and the room was dark and he was watching cartoons. And I curled up next to him and I was like, in the fetal position, miserable, absolutely miserable. And Mason said, ‘sh sh, it's okay, mama, it's okay.’ And pat my back. 

People say if you ever need a reminder on how to be present just spend some time with a toddler. Jessica says that was especially true with Mason. 

Grabbing your face and making you look at him and just his joyful like existence literally made people like people just stare at him with dropped jaws and he would like like when you're going to a restaurant, he would just wave at everyone. And he'd sit there and just like, stare at people until they looked at him ... He definitely forced you into here now.

On the morning of March 31, 2016, Jessica was in bed recovering from surgery to remove her tonsils.

I had spent from midnight to 6 a.m. in the emergency room because I was bleeding, post tonsils, bleeding. And I had gotten home at like 6:30, I think, and went straight to bed. And I woke up at nine to the screams of my ex-husband that there had been a horrible, horrible mistake. And I ran to the top of the staircase and looked down. And Mike was holding Mason in his arms at the at the base of the stairs. And Mason's head had clearly been run over. Mikey and Megan were downstairs. A five year old and a seven year old. And I. I had run to the top of the stairs and as I was running, I was trying to put my glasses on and I put my glasses on and it was like, holy fuck, am I actually seeing what I think I'm seeing? And I ran downstairs as fast as I could. I fell downstairs and I scooped Mason up and I told the kids to lock the door that we were going to the hospital and to not let anybody in the house besides grandpa and the police officers. 

They got in the car and drove to the hospital. Jessica’s husband called 9-1-1 on the way.

My former husband was driving and I was in the back seat and I was holding Mason. And while I was in the backseat, I was doing chest compressions. And his face was completely gone...And as I'm doing these chest compressions, I had this thought, well. Do you actually want him to live or don't you? You haven't given him a breath. And so I gave him mouth to mouth. And my entire mouth filled with blood…PAUSE And then when we got to the hospital, I worked there, so I know where I'm going and I just ran as fast as I could to Trauma Bay three because I knew that's where they were going to put us. And as I was running, I was screaming with my hoarse voice. And I had just been there. I had just been in the emergency room four hours before I was screaming that we need help. We needed neurosurgery. We needed a general surgeon, Please help me. My baby is dying. My baby is dying. And then when I got to the trauma bay, I set Mason on the gurney. 

A doctor who had worked with Jessica stepped in to start CPR.

But when she looked at him, she knew he was dead. Just as I knew he was dead. But I needed I needed time. So they did CPR and intubated and stuff like that to try to save his life. And it didn't work, of course. 

Jessica climbed onto the gurney and tried CPR again. She said she needed to know she had done everything to try to save his life.  She needed to feel her son’s warmth leave his body. 

At this point about 75 people who worked at the hospital had gathered in the room and everyone fell completely silent.

The doctor announced the time of death.

Jessica couldn’t walk out of the room. She stayed on the gurney and sang Mason his goodnight song, she cut a lock of his hair to take home, she took a picture of his hand resting on her chest, and she held him… for four hours.  

I think when people hear me say my son's death was beautiful, I think I think they think, well, that can't possibly be true. There's nothing beautiful about that. But when I've experienced the amount of death that I've experienced at work and I've seen how it's been done. I can tell you that Mason's death was handled very, very well. One of my favorite quotes is: “you can't always be the knight in shining armor. Sometimes you can only be the moonlight in somebody's darkness.” What felt right about the experience is everyone was present. And to get a room full of 70 people. That are all existing in the same space and holding hope and love and sadness in the same space… was beautiful. And so they cried with me. They were silent for him. They allowed themselves to just feel the gravity of the situation.

When they got home Jessica knew she had to tell her two other young children (ages five and seven) – that Mason had died.

I got on my knees and I explained to them that Mason was never coming home. And that he was dead. And he was never coming home… And I've never used words like he's passed away. He's transitioned to the other side. God needed him more than we did, which other people tried to use. I use the words, Your brother is dead and he's never coming home. 

In the days that followed they prepared for Mason’s memorial service. Jessica’s friend drove her to the mortuary to select a casket. There was really only one that was child sized.

I, like, climbed into the casket and I was I was ripping apart the bottom of the casket. And there's all this like, like, hay, material in there to help the body decompose. And I was like, trying to get my smell in it and trying to rub my chest in it and trying to get my head in it. And I know that the the funeral home guy thought that was a little weird. My friend did, too. They're like, Holy shit, she's losing it. Maybe it was. And so I finally just stood up and I got up and I was like, So is this casket mine? And he's like, Yeah. And I said, So I'm paying for it. So it's mine, it's my casket. And he said, Yeah, this is your casket. And I said, So can I take it home? And he was like, Yeah, you can take it home. And so I was a very skinny because I lost so much weight. I was 112 pounds. Five, nine tiny. And so my gangly, long armed. Skinny self said, Great, I'm going to take this home right now. And I started grabbing the casket and trying to lift it and kick it out. 

Finally the mortician suggested he drive it to her home. So Jessica and her friend got in the car to go home and meet him there.

And we get in the car and she was like, ‘do we think this is a good idea?’ And I was like, I was like, I don't really care if it's a good idea or not. That casket needs to be decorated. That casket needs Mason’s sheets. It needs his pillow. It needs my smell. I don't care if it's a good idea. I'm taking the casket home. And so she was like, ‘yeah, I think I'm going to call everyone.’ 

But by the time they got home the casket had already arrived. Several friends and relatives were there, shocked by the hearse’s arrival in the driveway. So when Jessica walked in expecting to see the casket in their living room she was surprised to find it wasn’t there.

And I was pissed. I was like, where is the casket? And everybody was like, Oh, well, just because the children, we didn't want them to see that. So we took it and we put it upstairs. And I was like, Who do you think you are? So you're hiding the casket from my children. And they were like, yeah, it's just upstairs. And I said, okay. And I went and got my kids. Megan so guys, I have something I want to show you. Can you come upstairs with me? And they're like, Yeah. And at this point, I had taken the casket out of the closet and put it in my room smack dab in the middle of my room, and we walk into my room. And Megan, five years old, went, Oh, oh, that is the most beautiful box. And I was like, You're right. It is a beautiful box, baby. And you know what? This is where we're going to put Mason's body, and this is where he's going to spend the rest of eternity in this box. Will you help me decorate it? Will you help me make it pretty? And the answer, of course, was yes. And so we decorated the box. I brought it outside. I painted it. We put we bedazzled it. That was Megan's idea. The kids wrote, I love you on the side of it. It was the most beautiful casket.

Jessica says she’s received a significant amount of judgment on how direct and honest she is with her kids.

But I can tell you that my children are going to live with this trauma and this suffering for probably 50 more years than I am. And I was not going to have them have a foundation built on toothpicks and bubblegum. I was going to build them a solid foundation that they could heal from. And I knew that leaving the emergency department, I knew that I needed to do that, that this was not about me. Had nothing to do with me. Everything to do with how can I help my children survive? And so I took that very seriously.

Jessica had told a friend she wanted a tree planted where Mason was run over. What followed was an outpouring of love from the community. Friends from the hospital and the kids' school showed up to plant trees, flowers, and someone even built a water feature in the backyard to honor the boy who loved going outside. 

Then when it came time for the memorial service hundreds of people came to show their support.

I let the kids decide what they wanted to do. So I had both of them think of like, well, how would you guys like to be included in this? And Megan said that she wanted to sing Jesus Loves Me with all of her church friends in front of the the funeral. And so she did that. And Mikey said, I want to go to Chucky Cheese's and play video games. And I was like, So maybe not that. And so he went from like Chucky cheeses to play video games to. Why don't we write letters to Mason and send him up to heaven on balloons? And I was like, significantly better than Chucky Cheese's. 

The following day Jessica knew that she needed to ask her husband for a divorce.

I have since done a tremendous amount of therapy, and I can tell anybody that wants to listen that I do forgive him for killing my son. And the reason that makes me able to forgive him is because he did not wake up and say, I'm going to kill a kid today. Absolutely not. Absolutely not. That would be monstrous. He made bad choices and he accidentally killed my son. But he didn't do it on purpose. And so I. I can forgive him for for that.

Before all that therapy Jessica had been trying to cope in an unhealthy way. She would run down to the bottom of the Grand Canyon and back out often in 100 degree heat – a feat that typically takes months of training and preparation. She did this sometimes twice a week… and often without food or water.

I was too exhausted to be mad. I was too exhausted to be the mother of a dead child. I was too exhausted to be broke. I was too exhausted to be so many things. I could just be me. And finding myself in the bottom of the Grand Canyon every week. Was really beautiful. I felt really lucky that I had that. But I realize now that it probably wasn't the most healthy thing for me to do because, like I said, I was a sack of bones. I was only just very, very skinny and I wouldn't bring any food and maybe I'd bring water and I just run. And so it almost was as if I was trying to kill myself. And I don't know that I. I mean, I never thought, I'm going to go in the canyon and die. I never thought that. What I did think is I can survive anything. Bring it on, Universe. Bring it on, Grand Canyon. 

Almost a year after Mason’s death an idea came to her that she could share her experience with other health professionals. She called it Project 660 – the number of days Mason was alive.

The way that his death was done by the health care professionals was something that I had never seen as a nurse before. It was brutally beautiful and orchestrated so well that it inspired me to try to teach people how to do that. I was just thinking, God I got so lucky. Like how, how and how did I get to experience a death like that in a trauma bay it doesn't exist.

As part of Project 660, Jessica has traveled around the world to give talks like this one:

Invite family into the room. Saturate their senses to know the death is true. Empower them to make their own decisions. Most importantly I want to heal them and us. 

She suggests the nurses and doctors in the audience ask themselves some tough questions.

I want people to ask themselves. If somebody that they love more than anything in the entire world were to die. What would you want their death story to look like? I want you to make that up. I want you to create that death story. Do you want music? Do you want to hold their hand? Do you want to kiss their forehead? 

A couple of years after her divorce Jessica started seeing someone new. Not long into the relationship, she discovered she was pregnant.

To be quite honest with you. I when I found out I was pregnant, I was super, super scared. I didn't because I knew that this pregnancy and this child would force me to find joy. And I wasn't ready. And granted, this was two years after his death. I was not ready to be to have joy. So I was kind of mad at the universe for the situation that I was in. And I was like, what the hell can I just suffer for five years?

She had a lot of anxiety about bringing another fragile life into the world.

There's a definite realization that this baby could die. And I think it just forces you to be more present. 

Annika was born in November of 2018. With her came a realization that for so long Jessica had not known authentic joy.

I was tickling her. She's a little like four months old and I was tickling her and she laughed for the first time. It literally brought me to my knees. Because it felt so fucking good. It was my first time feeling authentic, soul-felt, completely present joy. 

PAUSE I don't think that. I ever would have been this version of myself, this conscious, present, authentically joyful person without his death. And when I say authentically joy, I don't. Did I laugh before Mason's death? Yeah. Did I mess around? Yeah. Did I think life was fun and funny? Sure. But there's something quite different. About feeling joy after you've had something so shatteringly profound happen in your life.

Jessica says she lives a bigger, bolder, better version of herself because of Mason. 

I'm alive. I'm conscious. I'm intentional. I'm present. I value time more than anything that that I can ever remember. Time with my children. Time with my husband. Time just, oh, God. You know, those moments when you have children and it's really, really hard and they're sick and they're throwing up all over you or they got snot on your chest. I'm different now because when my kids are laying on my chest and they're drooling and I'm certain to get sick from whatever virus they have, I feel that. I am totally present with what that feels like.

It’s been nearly seven years since Mason died. Jessica is remarried with four kids and one more on the way. And she’s getting her doctorate to do a better job of educating health professionals. She spends her free time in Mason’s garden.

There are things that you can do that put you on a higher vibration. For me, it is hard work outside hiking, biking, skiing. But I always feel him and I think that I can feel like his his presence on on me when I'm doing those things.

She’s learned to invite others into her grief.

They might be wildly uncomfortable. But don't lock yourself in the darkness of grief alone. Leave the door cracked.

She’s also learned that time does not heal all wounds as the expression would suggest.

That is absolutely not even close to the truth. I think when you have a dead kid, you still feel the tremendous pain almost daily. But the thing about time is that you begin to trust yourself with the pain. Initially, I thought it was so much I couldn't breathe and I couldn't live. But then I continued to breathe and I continued to live. So now I just look at my pain and I say, Huh, here we go again. …Grieving is about trusting yourself with the pain and knowing that. You wouldn't feel this much pain if you didn't love them so fucking much.

This is 2 Lives. I’m Laurel Morales.