Before I Am Thankful

Written November 19th, 2017

I lost you a year ago today.

That isn’t to say it is the day that you died. No, that day is close, just on the horizon, but that wasn’t what happened on November 19th, 2016. In so many ways, what did was worse.

When I left your room the night before, I could have never known that was goodbye. People so often don’t. So many times I had thought our time was up, that this was going to be it. Uneasy drives with you in my belly to Children’s Hospital for emergency appointments after bad ultrasounds with words like “heart failure” floating around the room. Or as you were carried from my womb and given over to the team of over twenty waiting for you nearby. Times when you wouldn’t stop bleeding. Times when your heart was beating twice as fast as it should. So many instances when I had held your hand and cried tears over your bed thinking “this could be it, this could be it.”

But none of those moments ever took you from me. And on the evening of November 18th, as I took your sisters hand and turned to leave you in the care of your father and a world class medical staff, imagining losing you was the furthest it had ever been from my thoughts since I heard the words “birth defect.” The surgeries were over, the biggest mountains were climbed. I knew there were still risks. I knew there were still dangers. But they felt small. My heart remained guarded, but in a passive way. Regardless, I could not have predicted what came next. A nightmare. The nightmare. We were about to be suddenly knocked from the mountain altogether. And we were going to fall out of sight of each other as we did.

As the sun rose on the 19th, all still seemed well. I recall the overnight nurse from that shift later telling me that she herself had told her regular carpool crew how great you were looking as they all headed home that morning. Optimism. It was spilling out all over regarding you, which made your fate seem even crueler. She also wondered later what could have been done to prevent what had happened next. I asked her if she had come to any conclusions, and she shook her head, tears streaming down her face. Neither had I.

I keep alluding to what went wrong without directly addressing it. But even here, a year later, I am not quite sure. I regret few of my choices throughout your lifetime Beckett. But the few I do have bang around endlessly within me. That I was not with you that day is the biggest of them all. Could it have made a difference? Could I have saved you? Would I understand it if I had seen it with my own eyes? I doubt it. But I can’t know for certain. I had been there on nearly each day, for nearly each moment. But on this particular brief absence, everything went wrong. It will always haunt me that I was not there. And it will always haunt your father that he was.

The simplest account of things is that something just went wrong. Your day was normal, and then it was not. Your heart rate accelerated, your blood pressure dipped. I had taken Moira to a fun lunch, adding some festivity for what I thought was a plain Saturday. Your dad was texting me updates on you, as he always had. But they started to change in tone. I eventually wrote “this is starting to sound like an emergency?” to which he responded “it’s starting to feel like one too.”

You went from normal to a little off to flat-out in-crisis in a matter of a few hours. I wasn’t there, but your dad filled me in. And while I wasn’t bearing witness to this disaster, I had seen all the others and knew, this one is bad. My phone was unhinged, buzzing like a bee, and my responses were just as quick. What, how, when, why? All the medical jargon I had picked up from four months in the ICU pouring out on to my phone screen as Tyler relayed what was happening and I relayed my questions. Here I am a year later, the conversation is over, but the answers have never come.

When I finally reached the hospital, I could still see the crowd surrounding your doorway, all the way at the end of the hall. I walked past quickly, some friendly, familiar faces offering encouraging smiles, others asking me what had happened? News of your episode had stretched unit wide. I hurried to your bedside where things were still very much happening. Many new IV’s, you already swelling from pushed fluids. A very trusted neonatologist present alongside a favorite cardiologist. I was both relieved and horrified. The seriousness had still been somewhat lost on me, a natural side-effect that comes with your dad. He is always so upbeat.

I was given the best explanation the team could draw up-they suspected you had an infection. Or that maybe your heart had gone in to a strange rhythm and it had created poor profusion. But all seemed right now. Or at least stable. I was tired, and upset, but death still hadn’t become a pronounced threat in my mind. We had experienced too many scary moments that had ended up okay. Even here, in a land of constant terror, I had become comfortable. My moments of comfort were ticking away, the shadow was in the doorway. But I didn’t see it yet.

What we didn’t know just then was that your low blood pressure had gone on for far too long. That in those early moments of differing behavior, what looked like a little strangeness was already an emergency. Low blood pressure meant no oxygen to your brain. Your body went in to crisis. And at some point during that afternoon as everyone wondered what was going on with Beckett, you slipped away. When I am at my darkest, imagining the worst of the so many terrible things that happened to you, this is what I think of. You, laying on your back, a hospital ceiling in sight, literally losing your mind. And I wasn’t there baby. I can’t tell you how broken that makes me.

A few days later, we would notice physical changes that seemed unusual in you. New hand motions, mouth clamping. And something worse still, something I kept secret. That your personality seemed different to me. My mother’s intuition told me you weren’t there anymore, though its wasn’t a fully formed thought yet. I heard the reluctance in my voice as I called attention to the way your eyes wandered to the nurse a few days after the crisis. She looked at you with sweet concern, and then at me. “Has he looked at you at all?” I swallowed hard. “No.”

The changes came on quicker. A complete lack of temperature control, ranging from fevered to freezing. Jerky movements, bigger than I had ever seen. “Is he having a seizure?” I asked panicked as I reached out to touch your flailing arm. I saw the fear in the eyes of the nurse at his bedside with me. And underneath it all, my secret. That your disposition was off. That I couldn’t feel you the way I had on that last day we had spent together. I now saw the shadow.

And so came the neurology team. Our regular crew was defensive. Beckett wasn’t having seizures, they said. I knew they had grown to love you too and didn’t want to consider this ugly conclusion. We had all championed you so many times before. But concerning you, my love, I was always ahead of the curve. The shadow was growing, creeping forward, reaching out, touching us both. I shuddered in its darkness. Neurology ordered a night of monitoring, to watch for seizing. I remember looking at the EEG screen they had left set up, connected to countless wires attached to your head. Is that a seizure? I wondered. What are they looking for? I watched it, struck dumb with inability to read what I was looking at and resolved to spending another night wrapped in uncertainly, like so many before it.

The next morning someone came and removed it, bit by bit. The initial report? They had not seen anything. I relaxed. No seizures. It had all been my imagination. I should have basked in that moment, the last I would have to think that perhaps this would all turn out alright. Because just a few minutes later, different news. Neurology called. Wait, they said, we see something. I waited by your bed for hours to speak with the neurologist who had read your report. Subclinical seizures he told me. Lots of them. “But what worries me,” he said “isn’t that he is having seizures.  What worries me is why is he having them? We want an MRI.”

It all snowballed from there. We prepped you for a grand excursion to the ground level of the hospital, an involved process to say the least. I looked for signs that you were well, that this was all less serious than it seemed. But the absence of your typical temperament persisted to pester my spirit. Beckett? Beckett? I helped take you downstairs and stayed alongside you until they had you in the room for the MRI itself. It was the same room I had been taken to while you were in utero. I thought that was ironic.

I went back upstairs and the staff requested I move rooms. This had happened a few times before. It was a hospital after all and they wanted the chance to deep clean each patient room. That was fine I said. In a sense, I was glad to do it. It gave me something to do as my mind wandered, imagining you four floors below. Our next room will be better I told myself, no more medical emergencies. I guess that part ended up being true. But it definitely was not better. Because our very first night in that room, the worst would be confirmed to us. Your results were in and they were devastating. You had global brain damage. Damage to every part of your brain, even the cerebellum, which we were told is protected at all costs by the body. If it had been compromised, it meant the damage had been extensive. The neurologist told us you would never breath, walk, talk, or eat by yourself. “What about personality?” I asked. That comes from the frontal lobe, one of the most damaged parts, I was told. Your daddy asked what life expectancy they would give you. Perhaps 2 to 8 years the doctor replied. He suggested we get a second opinion to ease our minds. This all happened on the day before Thanksgiving. A charity organization came by our room an hour or so later with a donated dinner for the holiday. We ate it then, not out of glee for the chance to enjoy an extravagant meal, but because neither of us had the energy to leave the room. I remember crying my eyes out, tears falling all over the food on my paper plate.

For the first time in our stay in Children’s Hospital, the phrase “quality of life” was said in our room. We got the second opinion, and it was as bad as the first. This doctor showed us images from your MRI and compared them to regular brain images. Where I had floundered trying to decipher the EEG, I did not need a neurology degree to see the disrepair. The images were not recognizable as similar, your brain did not look like a brain. Our team, that had fought alongside us at every turn, that had never suggested we do anything but move forward, now saw the shadow too. Your amazing father, who had been my rock throughout your often complicated life, still did not. For this part of our journey, I would take the reigns. I had long prepared my heart for this outcome, and he had not at all. What an amazing man.

I continued to explore options, but with none of my same vigor. Remember those regrets? This is one of them too. I wonder if you could sense that I was waving the white flag. I hope not. My instinct tells me no, that the Beckett I had known was gone by then, but still, I wish I had been more resolved to fight. But I was tired. And so were you. The shadow had taken us both, and I could not find you within it.

What followed was two weeks of weeping. And heartbreak. Constant and cruel. When is the right time to end the life of your own child? We couldn’t answer that question. But we watched you as you digressed more and more. You were becoming unrecognizably swollen. You seemed angry. Your pain was apparent and I couldn’t stand it. Is this for nothing? What are we doing? I was sure of what was coming, but I couldn’t be the one to do it. And so you, sweet champion, did it for me. You stopped breathing, your blood gas becoming lethal. End it now or he will go on his own they told us. So we did. It was the worst thing I have ever had to do, but the bad news had come two weeks before. You died in my arms that night, but like I have already said, I lost you well before that.

What is a repeated memory in my mind is not the day you had the crisis, but instead of the one before it, not the 19th, but the 18th. The last true one I spent with you. It was so ordinary, and so wonderful and good. We snuggled and I took pictures of you, including the one I’ve shared here. But also it leaves me feeling guilty. I took that day for granted. Because I thought we had time. Because we all always think that we do. I didn’t know that was my last chance to stare in to your lovely hazel eyes. I didn’t know I should be raising the alarm. I’ve tried so hard to remember, but I’m not even sure if I kissed you goodbye.

Had I known what was coming Beckett, I never would have left your room. I never would have looked away from your face. I would have held your hand and whispered “I love you’s” in to your ear until my legs gave out beneath me and my lips had turned to stone. I would still be there with you now. But I didn’t. I didn’t know, so I didn’t stay. What I do know is that my love for you is a sea and I will let its waves crash upon you forever.