The Unspeakable Spoken

There is a singular grief topic on which I have avoided writing. Perhaps because I cannot tie it up in any kind of bow yet. Or perhaps because it is so deeply personal and raw that even after ten months, I still struggle to face it head on without being overcome by it. It seems, however, a grave disservice to the journey to not speak on it more directly. So, I’m going to dive into an often hidden subject relating to the grief process – guilt.

My mom tells the story that while driving home one wintery day, our car got trapped in the snow just down the street from our house. She decided we should simply walk the rest of the way. Even though the middle of the street was far clearer of snow, and I was with my mom, she simply could not convince me that on this occasion it was ok to break the very well-established rule of not walking in the street. So my toddler-self, full of annoyingly righteous integrity, walked all the way home through a snow bank on the shoulder of the road. Because I believed it was the right thing to do. (And maybe because I’m a little bit stubborn, I am a Dorrell after all.)

And while I’ve, hopefully, grown a bit in my understanding of rules and rigidity, there’s an echo within this story that speaks to who I am and what drives me. In short, you could say that I really don’t like doing (or feeling that I’ve done) the wrong thing.

What happens, though, when something exists solidly in the gray-zones of life? Where there is more than one right pathway, more than one right answer. Or when there’s nothing that you can do that will make something right, no matter how hard you try? It’s tough then to orient yourself when your worldview is built on a morality that exists in black and white.

I will forever remember the day we received our diagnosis. The doctor started by explaining Gibson’s situation. She began drawing little pictures and diagrams to show us what a heart should look like and what Gibson’s heart looked like instead. She talked about worst case scenarios – horrifying possibilities that I had never even considered previously. She told me that some people, in our situation, would choose to abort. And reminded me that I only had 4 days left to make that decision. She outlined how this reoriented our birth plan and what we needed to start deciding for our future. So on and so forth.

I heard her, but I also heard nothing. My mind was reeling.

And then she looked me directly in the eyes and said, “You should know that there is absolutely nothing that you did wrong.” And my mind snapped back into the present as tears erupted.

I hadn’t even noticed the voice inside my head that had already begun asking that question. Feelings that were permeating throughout my body unknowingly – a sense of shame, fear, and anger. A sense that I had failed to do my job.

Guilt was slowly invading. However, in the short-term, I was able to shove it aside. I needed to shift into go-mode. My focus now was on “doing all the right things” to ensure that Gibson had the very best care. I researched treatment options. I talked to experts. I built a filing system for tracking bills and test results. I organized support and plans for the difficult journey ahead. If I took all the right steps, I could control the outcome.

But when the time came for Gibson to be delivered, things got messy.

After the c-section, Gibson was whisked away for immediate medical intervention before I could even see him with my own eyes. He and Dustin were transferred by ambulance to the Cardiac NICU at Children’s Hospital Los Angeles and I was left behind at the delivery hospital across the street to go through my own recovery. In a way, this insulated me from having to fully face the seriousness of our situation and from fully connecting to Gibson immediately. Not an unusual thing for new moms, so I hear.

The first time I met Gibson, so much had already happened. He was connected to countless wires, surrounded by dozens of machines that were blinking and beeping. In fact, it terrified me that I might accidentally dislodge one of his tubes or wires just by touching him. His face was so swollen from water retention after his heart surgeries that I barely recognized him as the same baby that Dustin had sent me photos of just after he was born or that I’d seen on Facetime.

He’d just experienced a code-blue incident where his heart had stopped (which is what prompted my early discharge from the hospital.) As a result, he was being placed on an even more terrifying machine called ECMO, which would temporarily do the work of his heart – pumping his blood out of his body, into the machine for oxygenation, and then back into the rest of his body. A last resort, hopefully allowing his heart the time it needed to recover from all the trauma. As if that wasn’t enough, he was simultaneously being connected to an octopus-like cap with dozens of additional diodes that would monitor his brain for bleeding – a potential side-effect of the ECMO machine.

There were dozens of doctors and nurses constantly buzzing around Gibson. All with so much purpose. Checking vitals, administering medications, running tests, asking us permission for things we barely understood, performing daily rounds and making plans. It was a well-oiled machine, and I, in comparison, felt highly insignificant and utterly useless.

It was as if I was existing in another body during all of this. Life was frantically happening to me and around me. But I could not process all that I was seeing. I could not yet process that this was actually my son. It felt like another world in which I did not belong.

Then, on the morning of his third day of life, came the unthinkable.

The doctors told us that they did not believe Gibson would survive. He had suffered a severe brain bleed as a result of the ECMO machine that was meant to save his life and they explained that this kind of trauma to both his heart and his brain at the same time was too much. It was unrecoverable and only a matter of time now.

And that’s when the feelings of motherhood rushed over me. My body and heart kicked into gear for the first time. I was suddenly unfrozen, with a flood of emotion and connection. This was my son. My baby. He was born. He is alive. He is mine. Just as the thoughts settled solidly into my being, I realized that he was slipping away. I was too late, it seemed.

A short time later, his little heart came to a full and complete stop. There he laid, perfectly cradled in my arms for the first and last time. All I could do was pour out the countless list of things I’d wanted to say for days but hadn’t felt the freedom to say in front of so many strangers. To speak all the things I had carried in my heart for months, but hadn’t known how to put into words. I didn’t want to miss my last opportunity to say these things to him directly.

After it was over, Dustin and I were moved outside the glass walls of his NICU room onto a bench in the hallway. I watched through the glass as the nurses removed all of the wires and the tape covering every inch of his body. Machines that only moments before had been keeping my son alive, now sat purposeless.

I lost it. The cries that escaped my body came from the deepest crevices of my soul; places I had never known existed. On full display for all to see. I was racked with grief and overwhelmed by sadness – but more specifically, guilt.

It was my fault. I was his MOM. I was supposed to protect him. How could I have let this happen? I know it may seem silly, but all I could think about was that if I had only opened my heart quicker, if I had bonded sooner, maybe all of this would have had turned out differently. It must be the reason that this nightmare was happening.

If only…. if only… if only… raced through my brain. Questions that continue to evolve and haunt me.

A few days after Gibson passed, the CHLA Cardiology Department therapist called to see how I was doing. I shared the guilt and anger I was carrying over the way I’d spent my time during those three days. I always had something else to do or somewhere else to be other than simply being next to Gibson. Whether that was my time spent at the delivery hospital recovering… unsuccessfully attempting to pump in the bathroom or behind a curtain… visiting the doctor’s office to pick up pain medication and get my staples out because I’d left the hospital too early… eating dinner in the waiting room because food wasn’t allowed in the NICU. It felt like I’d wasted the little time I’d been given. And she kindly replied, “Oh, Stormie. There was never enough time. There’s no amount of time that you would have been given which would have felt like enough. Even if you hadn’t done any of those things.”

Maybe a month or so later, Dustin and I found ourselves in the garage doing some organizing. Dustin knew all that I’ve shared above, but, there were some specific thoughts that I had kept only to myself up to that point. Feelings of guilt that were consuming me, which I felt I needed to share with him. So there we sat in the garage, the two of us, surrounded by storage containers, toolboxes, and our grief. It all came bursting out. An onslaught of thoughts and feelings that were probably dangerous to keep only to myself.

He held my hands and listened as I struggled to articulate these hidden shames that I’d been carrying all alone. Things that I had been afraid to admit aloud to anyone else up to that point. He wiped away both of our tears and, once again, reminded me that we did the very best we could but that we were in an impossible situation.

These feelings of guilt have continued to plague me. In different ways and at different times. Rational and irrational, they all find a way in. Without wanting to, I’d find myself drifting back to that hallway in my mind. Where a glass wall stood between Gibson and I, a physical representation of all my trauma and pain. And with that reminder, an onslaught of grief and guilt. Of all the things that I wish were different. Of things I wish I could go back and change, knowing what I know today.

Despite my attempt to do all the right things, the unimaginable had still happened. My brain struggles to make sense of it. It desperately wants to find reason where there is only chaos. So, I turn to things that seemed under my control. I dissect them again and again. Sometimes those results are valid. Many times, they are not. Regardless, the feelings of guilt persist.

Recently, my therapist asked, “Do you think that Gibson or Dustin can forgive you for the things that you continue to hold over your own head?”

My answer was, without hesitation, “Absolutely they do. I honestly never thought that they blamed me for any of it.”

“So then,” she asked, “is there ever a world in which you can forgive yourself for these same things?”

Here it is, folks. The ugly truth. My honest answer is no. No, I cannot and do not even want to forgive myself. At least not right now. Maybe someday. But that day is not today. It’s not the answer you’re supposed to give, but it’s the truth. Why that is the case, I promise has been (and probably will continue to be) a regularly occurring theme in my counseling sessions.

In the meantime, I’m working to accept that the world often exists in shades of gray. That there is generally more than one right answer to complicated problems, more than one pathway I can choose. I am reminding myself that there is only so much control that I have over my circumstances. That there is a difference between doing my best with the information I’ve been given and achieving a level of perfection that is beyond human feasibility.

And maybe, just maybe, finding ways to offer myself more grace and forgiveness in the future.