An impossibly hard decision that I will most definitely regret for the rest of my life

Part 2

Trigger warning: This is the second part of a series on the loss of a baby. My goal with this is not for you to offer me sympathy, tho I am comforted by it, but more because I have found that every time I say something deeply true and personal, someone out there needs to hear it. Please be gentle with yourself. Notice if feelings come up and just do something else if that feels better.

A starting place might be to look for the origins of our Western moral ideals. All my life, I have wanted to be a “good” person. But “what is a good person?” is always the question. In Friedrich Nietzsche’s On the Genealogy of Morality, he sets out to understand the etymology of Judeo-Christian ethics that are at the foundation of Western thought.

As I understand it, he suggests that a “good” person is one who sacrifices themselves for others. An “evil” or “bad” person is one who puts their own will above others.

“One must shed the bad taste of wanting to agree with many. “Good” is no longer good when one’s neighbor mouths it. And how should there be a “common good”! The term contradicts itself: whatever can be common always has little value. In the end it must be as it is and always has been: great things remain for the great, abysses for the profound, nuances and shudders for the refined, and, in brief, all that is rare for the rare.” ―Friedrich Nietzsche, Beyond Good and Evil

For me, the above is interesting in that: a) Nietzsche seems to be arguing against the absolutes of good and evil and questioning how and why we make the choices we do; and b) that life happens “Beyond Good and Evil.” I would say that perhaps all of this is an argument in asking you, dear reader, to be gentle on your judgements. That nothing is ever clear like I hope it would be. Simplicity is an illusion and stability is a lie. And yet, how do we find the will to go on?

I grew up on the Kool-Aid of “no regrets” culture. If I was to describe the feeling that was the ultimate goal it would be one like, “All the things that I did, all the mistakes I made, led me to be here. At this moment. And I wouldn’t want to change a thing. Because then I wouldn’t be here. And here is where I want to be.”

I would have preferred to be anywhere else last week. And yet, I felt lucky to be where I was at. Feeling both incredibly lucky and crying, swinging from two apparently emotional extremes is how I spent my last two weeks. I joked to a friend of mine, “things could be worse, we could be in Texas.” No offense, Texas. I just think you have made a harder situation harder in my opinion.

On the night before M’s second birthday party, I got the call that I had been waiting for for months. It was from our genetic counselor. Her name was Sam. She has a son a year older than M. We started working together when I found out that I was indeed pregnant and was told that I needed to get extensive genetic testing ASAP with this pregnancy.

We met via Zoom for two hours and talked about my family history and Josh’s family history. We went over M’s current medical condition. Her non-functioning pancreas. Her lungs that could never be clear and were already showing damage at the ripe old age of 2. That it was some cruel joke that she needed to get 5,000 calories a day but eating food was painful. And yet, she is so joyful. So completely alive.

Sam told me about the testing timeline. She listened when I told her that we had been told that ultimately it was our decision, but we had discussed that if the baby did carry the two gene mutations, that it would be the best long-term minimization of pain and sickness to terminate the pregnancy. That the baby would most likely have the same manifestation of the symptoms that M has and they would need to spend their lives as separate as possible as to not infect each other.

When I found out I was pregnant, I was elated. I don’t know if it is a typical response to being pregnant, but despite being sick and achy, I was on a cloud of joy imagining the future. Our future family. I imagined everything from bath time with two kids, to nature walks, to pillow forts, puppet shows, food fights, painting sessions, watching our garden grow.

I wanted a girl. I wanted M to have a Casey. For them to learn how to be good people together. To test out social boundaries with each other. To have someone to complain about me with who would really understand. I thought two kids would be just right.

I knew the numbers were actually on our side. There was a 1 in 4 chance the baby would have the two faulty genes. I focused on the 75% chance that the baby was fine. That she would come into this world in good health. And enjoy the same advantages that I had—when I got sick, I got better. Something I always took for granted.

Is more information better? That is always the question. Would you rather know when you will die or not know and just try to live life to the fullest? I have always said more information is better. To have the feeling that personal agency is possible, it would seem logical that more information would always be helpful. It was agreed on that we would want to know everything.

With M, we didn’t want to know everything. Only the life-threatening things: a) because I wanted her no matter what; and b) I “knew” she was healthy. We had no history of genetic conditions in our families. And besides, those things happened to other people who were not us. We were both debatably healthy, so there was no reason to believe that the baby wouldn’t be. It would just cause more anxiety and worry to know.

I have changed my mind. I told myself that to best prepare, I needed to know.

We also agreed before if we got pregnant that we would terminate the pregnancy if we found out that the baby also had CF. Had we known that M would have had it, we would have terminated. This statement is going to contradict everything I have just said, but I am glad, with M that I didn’t know.

Would I give anything to have her healthy? Yes, I would. I would trade my own health. But it is complicated, because her health is dependent on my health and ability to take care of her. So maybe I need my health.

During pregnancy, my brain function plummets. I started to notice in my early 30s a certain cognitive decline. But during pregnancy, this “fog” only got worse. I had noticed that my decision-making skills were not my best, for example, I would tell myself it was ok if we didn’t brush our teeth, at least we had a bath. Or one day I screwed up one of her meds for the first time. I asked Josh if he would double-check my med routine in the mornings. Told him I couldn’t be trusted to get all the meds correct. That I was making mistakes that could make M sick. I focused as best I could, but I was clumsy. And since her meds are complex and constantly changing, I worried I could do damage if not kept in check. I stopped recording foods in her med/food journal. Telling myself, “You will just remember…” but I never do.

How do you give someone the news that everything they want and were dreaming about has to end? Sam just told me. She said just like that, “Your baby does have CF. I’m sorry.” I have come to appreciate direct honesty. That there is no perfect way to crush someone’s hopes. That the best way is to just get it out.

I spent a long time being really angry at the doctor who informed me about M. How dare she tell me something like that flatly. How dare she give my child a death sentence that she didn’t understand.

With Sam, I wasn’t angry. That ship had sailed. I was just sad. My body filled with cement. It took about an hour for it to hit me. To really take me down. The person I had been falling in love with over the past three months, I would never get to meet.

I went from feeling so confident that she was healthy… I don’t care what I said before, I want this baby no matter what. Whatever the cost. However, it has to happen. This baby is mine. People act like personalities are static. That we don’t change our minds. That situations don’t alter our core personhood. But I am here to say, that I changed my mind. Against all logic.

People who think that the root of logic is rational thought in my opinion are delusional. The root of logic is emotion. All of the nutrients that make up rational thoughts are derived from our emotional reactions to stimuli.

I was told that I was just being emotional. That men were more rational than women. That people didn’t make good decisions based on emotions. And I don’t know if I agree. Pushing back, I think that people feel things. And then they make a logic for why and why it is rational and then go on with their days.

I made the appointment with my OB on Monday for surgery on Tuesday. She asked if I was being coerced into making this decision. I told her “no.” That was a lie. I was coercing myself into the fact that this was the right decision. When honestly, there was no way to know if it was. That making the right decision was just a human construct. That right and wrong were clear and concise.

I sat in an empty waiting room. Alone. And cried. Studying the room. This was someone’s opinion on a soothing room. Someone in the recent past thought to themselves, “what would I want to see when I am about to have emergency surgery?” Oh yes, I would want to be in a windowless basement with clouds. I am not sure if a fish tank would have been an improvement.

No one was allowed to come with me. The baby and I spent our last few moments together alone. We got changed. A nice man named Jonathan showed us our bed in a shared room with a beige curtain. He said the bed would be warm. He weighed us. Together, combined, enmeshed, we were 137.6 pounds. My pregnancy app had told me we were like a person holding onto orange. You were an orange. My perfect fruit.

I listened to the conversations that were being held between the patient and the nurse just beyond the curtain next door. Catherine told the woman, Joan, not to be embarrassed that she had just pooped herself. That we all need a little help from time to time. And that she, Catherine, would be there for her. She would watch out for her. Take care of her. And be there for her when she woke from her hip replacement.

The kindness and generosity that Catherine showed a woman who could barely speak was heartbreaking. How she treated her with patience and dignity. It was beautiful. Was Catherine a good person? Was she just doing her job? Did it even matter? I suppose not.

In our final conversations with each other, the baby and I, we talked about different theories on why ceiling tiles aged at different rates. How the dot patterns can be drastically different from tile to tile. We were in love. We were also in pain.

I held on to my tummy with the delusion that she could know that I loved her even tho I was doing this. That sometimes really loving someone meant letting them go. That I was making the unfair choice for her that her life was not worth living. I imagined running. Running away. Pulling out the cords and disappearing into the night, even tho it was mid-afternoon.

The nurse I got told me that she had spent her life wanting kids. But it just was not in the cards. She was too old now. That her ship had passed. I felt for her. Also, I felt evil. There was an irony to her telling me this to comfort me while I was waiting for my OB to arrive. I got the sense that she was trying to soothe me and herself for playing the roles that we both were dealt with little if any consent.

I asked myself for a sign. A sign to tell me that I was making the right decision. It didn’t have to be real. It didn’t have to actually be a sign. I was just searching for comfort in the moment. And a sign is always nice when dealing with uncertainty.

And there she was. My OB. She popped in. We cried. She cried. All I remember her saying was two things, as we both cried and she wheeled me into the operating room:

  1. “I am not going to make this about me,” while sobbing.

  2. “I might not see you when this is over, but I am with you. I just don’t have childcare.”

She didn’t tell me I was a bad person. Or a good person. Despite the fact that I was longing for confirmation from anywhere I could get it. Even if it was that I indeed was a bad person, at least I would know. There is comfort in certainty. And I don’t know. I guess I am somewhere in between.