The Things That Need To Be Said

It’s been a long time since I have written here… and that’s by design. Truth be told, this blog is, in many ways, much more like a personal diary than anything else. Not sure if that’s a good or bad thing, or if judgment is even necessary (It’s not!) — but it is what it is.

If I don’t write something about this last week right now, it probably won’t ever get written… and something about that feels, well, wrong.  So, even though this emotionally feels like what I imagine getting your brains yanked out of your nose would feel like, I’m going to let the words do their thing, so that, hopefully, I only have to do this once.

On Wednesday, November 28th, I had to terminate a very wanted pregnancy at 14 weeks because of both genetic abnormality in the fetus and additional medical complications that placed both the fetus and my health in jeopardy. 

I didn’t want to do it, but the likelihood the kid would be born was less than 10%, and if it did manage to survive childbirth, the likelihood of it surviving to age 2 was even lower. Its immune system, lungs, and heart were all compromised, and it had a genetic abnormality that would require full-time medical care.

So, it wasn’t much of a choice. Adam and I had to “decide” between ending the pregnancy quickly (before the fetus developed to a point that it would begin suffering) and a best case scenario that involved impossible odds and required money we could never scrape up.  The most likely outcome of not deciding to end the pregnancy as soon as possible was that at least one of us would die, possibly both of us.  On the other side: if I ended the pregnancy, Adam and I could try again, and would most likely not face the problem again. (One educated friend described our situation as being hit with genetic lightning.) 

Family members and close friends keep checking in — wanting to know how I’m doing, and the answer is the same as it has been since the cystic hygroma was first spotted at week 11. I’m shitty!  And okay.  I’m very sad about the situation. I’m angry at nature. And I don’t want to talk about it. In fact, I’m typing about it right now because it requires the least amount of using my voice or emotional strength to communicate with anyone about this. 

Presently, I’m sore and achy and exhausted on every level. I’m still healing, and will be for the next 2 weeks, apparently.  But really, really — no matter how much grief I’m dealing with, no single emotion has overwhelmed me as strongly as the intense fury I hold for the people of Ohio, who, while I’ve been going through this, have been working hard to make the seemingly-unending agony that I was experiencing into a capital offense

So, while wrestling with the situation, waiting for genetic testing to be done and then returned, while worrying about what this could be — for the week leading up to the painful testing (CVS: not comfortable.) and the next 2 weeks leading to surgery, I kept asking myself, “Why not me? Should I die instead? Am I a murderer? Do I want to kill my child?”

I kept thinking about how hard I worked over the last decade to stop cyclical suicidal thinking. I kept asking myself if it wasn’t a more ethical choice to just kill myself instead — if this wasn’t somehow my fault. Doctors assured us that neither Adam nor I could have caused either of the medical situations that affected our fetus, but I kept searching for reasons to hate myself. I kept looking for malfeasance.

I found myself genuinely wondering how a loving and all-knowing God could create pregnancies like the one I was experiencing and then also make unkind idiots who believe that a woman should be put to death by her government if she, her doctor, and her partner made the horrifically painful, but necessary choice to end a pregnancy that was already all but guaranteed to kill the baby within the womb, and definitely within the first 2 years of life, but also put that woman’s very existence in danger as well.  

It honestly boggles the mind to think that an action that my OB/GYN — an expert in high-risk maternal fetal medicine — called “the only compassionate choice” is also, somehow an action deserving of death in the minds of folks who have never had to experience it. 

To be clear on my perspective: There’s no goodness in letting a fetus develop to the point that it has cognition and can feel pain, just so that it can definitely die, painfully, before it would ever utter a “hello.” There’s no Godliness in making a woman choose the life of a doomed baby over her own. There is no legitimate government interest in actively increasing the misery, pain, and financial burden of the parents of a doomed and dangerous pregnancy.

Society does not need to be protected from mothers like me. I do not belong in prison for life for this. I have to live with this. I have to live with myself and the knowledge of what this experience feels like and means about nature and my place in society and even the cosmic order. I chose to live… so I had better fucking live.

Part of the reason that I haven’t written about this or been willing to talk with the many of you who have reached out is that I’m not looking for anyone’s permission or absolution. I’m not signing up for judgment, and writing about your life or sharing with concerned friends or family members oftentimes seems like an invitation for others’ comments. I don’t have the emotional energy to deal with more negativity. I have enough. Shit, I don’t have the emotional energy to deal with thanking more people for caring! I barely have the will to “person,” let alone to entertain other people’s thoughts and questions.

I already have family members who have decided to bitch behind my back to my mother about how I update about my life quickly on Facebook instead of talking to them. Honestly, I’m just getting info out to people who care about me as expediently as I can. I’m floored and slightly overwhelmed by how many people have reached out with love and support in this gigantically awful time… and my ability to respond has been emotionally stunted, at best.  So, if you’re actually cranky about me not giving you “preferred status” with regard to windows into this hellscape nightmare, do us both a favor and get yourself a hobby. Gossip obviously isn’t entertaining you enough, and I’m not calling to entertain you. 

I am grieving.  But it doesn’t mean I have to share it.  My grief may not look like yours would. I’m not on anyone’s schedule, and I don’t owe anyone. Grief doesn’t care about schedules. Neither does pain.

TBH, I’m not crying much. I’m not thinking about what should have been my 4th child, if pregnancy were always perfect. I’m thinking about how Real Child 2, version 2.0 didn’t make it through beta testing, and hoping against hope that version 3.0 does better. 

I’m thinking about how, if version 3.0  is also a girl like its rainbow sister, I need to fight harder to protect her reproductive rights. 

I’m seething for the women of Ohio, who deserve more respect and care.

And, I’m grateful to live in Illinois, for the time, attention, and care given to me by the medical teams we worked with at UCMC and Northwestern, and to have both my mom and Adam around to help me get through this.

And for Henry, who cannot really understand what’s going on, but who is really enjoying extra time with MeeMaw.

And, yes, sometimes I’m crying out of absolute frustration over my lack of control over some of the most meaningful bits of life… but crying doesn’t help me feel better. Writing does. So, I’ve written the things that need to be said, so I can stop hearing them in my head.