My husband laughs at me, because I’ll be on the verge of falling asleep and remember something from earlier in that day that I mean to look into. So I’ll grab my phone and Google away. I’m always curious, always researching, always wanting to know how something works or how it came to be.
When we got the amnio results revealing Benjamin’s unbalanced translocation, I spent the days following researching all about how it happens, what risks are associated with different translocations, and how likely it was that one of us would be a balanced translocation carrier. I pored over the information, because the only thing I could do at that point was try to understand what was happening. I had to make sense of it.
I also tried to understand the grief we were already facing and would soon experience. What would it feel like? What was the normal process? Having limited experience in grief previously, it was somewhat of an unknown, which meant I had to know more about it.
The five stages of grief came up several times. Most of us know them: denial (and isolation), anger, bargaining, depression, and acceptance. Pretty straightforward. Not everyone experiences them in the same order, but what I gathered was that I could expect to experience all of these compartmentalized stages and eventually arrive at acceptance.
Acceptance. If I can just get to the point of acceptance, it’ll still hurt, but it’ll be a scar and no longer an open wound.
I immediately checked off denial and isolation. We had holed ourselves up in a hotel in Philadelphia, escaping only to treat ourselves to one of the frozen yogurt shops on every corner. We met with my uncle for breakfast once, and he made us laugh and forget for a few minutes. (I later learned that after he left, he felt so sad about our situation that he walked from Philadelphia all the way home to Oaklyn, NJ. The pain temporarily relieved from our shoulders went directly to his, and I can’t help but be amazed at the sadness and beauty of that.)
We always returned to our room and stared at the ceiling, begging for sleep to take over so we could forget again.
I don’t think I responded to more than a few e-mails or text messages, and when my phone rang, picking it up proved to be too heavy a burden. If only I could completely shut out the world, maybe this impending reality would just go away. We could be pregnant forever in a hotel in Philadelphia. But it never worked. Without fail, we’d wake up to a tidal wave of realization.
Denial and isolation. Check.
Anger didn’t come right away. Bargaining took the lead on anger. Please, let it be me. Let me do this for him. He can have my entire diaphragm and every last one of my chromosomes.
And after he was born, even right after he died, I experienced what I thought was a form of acceptance. My mind was in such a state of shock that, in order to protect itself, was convinced that it had accepted what just happened. Yes, of course it was profoundly sad. My heart was in a million pieces. But what could be done to change it? Nothing. Nothing would bring him back.
Acceptance. Check. We’re over halfway there.
I think anger hit when we were about halfway across the country during our move to Arizona. I was in the car, Eddie was in the truck, and I just screamed. I screamed until I physically couldn’t scream any longer. I felt anger toward the doctors who missed the signs all along the way. Anger at myself upon learning that my balanced translocation was the culprit of it all. Anger toward a god whose existence I am still questioning. I was in such an angry place, and I was quite content to stay there for a few days.
Anger. Check. ONE MORE and I’m done, right?
Depression is a funny thing. Funny-peculiar, I mean. It creeps in. It’s like trying to remember the beginning of a dream. There’s this fogginess between the point before depression and the time you realize it’s there. What makes it harder is that I’ve always been at least a little depressed, so I can’t even pinpoint when or how the depression that comes with grief set in. Also, I think part of it was that I was still coming down from the shock. The shock lulled me into this false sense of security where I thought I was okay. Combine all of that with finding out we were expecting Paisley, which was yet another layer separating me from depression.
It slipped in, unannounced, and festered beneath the surface until we had the wonderful news that Paisley was healthy. Once I was able to remove that stress from my plate, the depression found a weak spot took over. It was a parasite, and I was its host.
This stage still isn’t over. I’m able to manage it, but it’s still there. Especially now, as Benjamin’s second birthday approaches.
What I’m finding in these weeks is that the stages aren’t just things on a to-do list that I can check off. Just because I’ve experienced them doesn’t mean they stay away. Every last one of them has returned over the last two years. And they are far from compartmentalized, as I’d previously thought. They blend together, forming new colors of their own, all in shades of sad blue and angry red.
The other day, a stranger asked if I had any kids. This is usually a situation I’m able to handle pretty well–much better than I used to. At first it felt like betrayal to say one, but I worked through that with my therapist, and the guilt subsided. But with the way things have been lately, and thoughts of Benjamin heavier on my mind than usual, I blurted it out: “Two.” They asked if they were boys or girls, and I just said a boy and a girl. They responded: “Oh, that’s just perfect! You must be very happy.”
I told them I am, and left it at that. I allowed myself to explore the idea of having both of them at home waiting for me. Benjamin and Paisley. It was a form of denial, maybe even a little unhealthy. But it happened.
I had to pull over today and cry. Just let it out. I didn’t even recognize the sound of my own cry. I found myself right back in that hotel room in Philadelphia, audibly begging: Please, please, please. Benjamin, please. It took a while to return to the present and realize I was making zero sense.
My point (yes, I have one) is that it’s not as straightforward as I previously thought. There are times when I think about how quickly it all happened and how well we moved forward, and I’m really proud of us for that. Friends and family have mentioned how amazed they were and are at our recovery. Paisley’s timing played a huge part in all of that, and yes, I can recognize that we approached it all with pretty level heads. But the shades of grief are still there, still always gaining on each other, and sometimes one stage slides in with a friend or two just to remind me they’re still there.
I still think it’s normal. It doesn’t feel that way when I’m begging my steering wheel to bring him back or when I pretend he never left. I don’t think I’ll ever be able to fully accept something as unnatural as surviving my child, so I think I’m in a perpetual state of being on the verge of acceptance, with occasional regression to the other stages. It sounds sad, but it’s not always sad, and maybe, in its own way, it’s a form of acceptance. I accept that it will always hurt. I accept that the wound will never remain closed; it will always be vulnerable to my memories and surprise visits from Denial, Anger, Bargaining, and Depression.