My Last Night With You / Help with Grief
Trigger warning: This is about the termination of my pregnancy. If you feel like this is too much for you right now, just skip it. Please notice and take care of whatever it is you feel you need right now. Also, if I see you in person, please don’t ask me about it. I feel like it is really therapeutic for me to write about it but I am not ready to talk about it, still.
Do you need some help with your grief right now? Our understanding of grief is constantly changing. The research of Lucy Hone has been really helpful for me right now. Her work on noticing behavior patterns and how they make you feel has really transformed my understanding of how coping with grief can look different for different people. This is not one of those arguments, like “everything happens for a reason…” this is more of a “stuff happens, we notice how we are feeling and then we choose thought patterns that promote what makes us feel better. Not denying our pain. Just maybe avoid triggering events or limiting the number of thought loops you get into.
For example, “it could have been different, if only…” Noticing when you start having these thoughts, noticing how they make you feel (mine make me feel out of control and unable to function) and then maybe giving yourself a container for the thoughts - like I am only going to think about this for 2 minutes and then I am going to move on to something that makes me feel better.
Lucy gives the example of her choice to not go to the trial of the person who killed her daughter in a car accident. You have to read her story. But if I remember correctly, she thought about what good it would actually do for her to go to the trail (make her feel bad by having to re-live the anger and pain). So on the day of the trial, she did something else. Giving herself permission to notice the feeling and gives her the agency to avoid opening the fresh wound.
“GRIEF IS A BY-PRODUCT of love. Because we loved, so must we grieve when the person we love is no longer physically with us. But the fact that they’ve gone doesn’t mean that we must stop loving them, or thinking about them. Coming to terms with this fact, understanding that your love for that person never dies, is a major advance in our understanding of grief.”
― Lucy Hone, Resilient Grieving: Finding Strength and Embracing Life After a Loss That Changes Everything
Last week I was reminded of my recent pregnancy loss. Which I have to say has not gotten any easier. I got sent to a collections agency on the payment for the below procedure. In order to ask for it to be covered, I had to send a written letter to my insurance detailing the situation (my current daughter’s life expectancy and the decision to terminate) along with several doctor recommendations and lab work. Under my current insurance plan, abortions are only covered in the case of incest. Not in the case of medical necessity.
If there is something I hate doing, it is researching Cystic Fibrosis. I just don’t do it. When M was first diagnosed I posted about it, and people on my page told me about their kids who had it and died. Or a close friend of mine saying, “Oh, I had a friend in grad school who had that.” “Did they live?” “No.”
Or my coworker when I shared the news cried while saying, “Is that the thing where you have to pound their chest every day for hours? My daughter’s best friend growing up had it. She died at 12.” (I think they maybe found it comforting to know they were not alone? Or maybe wanted me to feel comforted that I was not alone? By no means did I think they were trying to hurt my feelings or cause pain - I know they were just trying to connect in meaningful ways and express their deep pain) I find that it is a useful delusion that M will live a long life. That we don’t know how long any of us will be around. That is the reality that I am comfortable living in. If you want to cheer me up, tell me something hopeful about people with CF.
Yesterday my dearest friend, Michelle shared this film:
I started watching it and lost it. If you want to know what it takes to have CF - watch this. I counld’t do it. Right now, M takes around 34 pills/meds per day and has 2 hours of breathing treatments. But she is doing great.
I am still sad. Every day I think about it. The pain is different now, less intense, but the sadness and longing feel deeper. If you want to read my story, it’s below. I can’t read it anymore. But I wanted to share it just in case you needed someone to be sad with.
ALSO, I kindly request, please don’t talk to me about it. Or Josh. I am really struggling to get through every day right now. The pain of existence is really heavy. I feel like it is part of MY healing process to be as transparent about this as possible - but also to respect my personal boundaries that I cannot talk to you about it in the grocery store. It will destroy me. I hope that in sharing this it helps you feel two things;
Like Glennon Doyle says, “We can do hard things.”
life is so painful and beautiful. And we are all humans trying to do the best we can for the people we love. I am trying really hard not to judge myself or others for the decisions they make. Who knows what you would have done if you were them. I want to believe that people are good. that they mean well. That “there isn’t anyone I couldn’t love once I heard their story.”
On my last night with you, I let myself hold you. I didn’t ask if you wanted to be held. I just did it. Like I did every night. But this night, I told you the story of you. In my head. How wanted you were. How much I loved you. How much the magic of your being was a delight to me.
How do you say goodbye to someone you have never met? But are you deeply in love with? I don’t know. I just don’t know.
Someone recently gave me some relationship advice. My partner and I have been having a hard time. They said that I should think about every kiss as the last kiss. In my mind, when I would leave for work in the mornings, I would mumble, “This could be our last kiss. The last time we touch.” And it helped. It became a theatrics of sorts. But beyond the first hesitation, when I let my body just lean into you, it felt real. There was a superficial generation of momentary passion that led me closer to you. It was not reciprocated. But it was still enough.
I started indulging in the thought of you almost immediately after M was born. I loved her. I loved my sister, I wanted to give M a sister. So badly. If I am honest, I also wanted to have a second child for selfish reasons, too. I wanted to go through the baby stage one more time. I wanted to fall in love again. I wanted to watch M grow up with someone on her team. I know these things are not guaranteed. That they could hate each other, that they could hate me. If having M has taught me anything, it is never to trust certainty in any form.
When they say that the origin of all love is the love we have for our children, it was hard for me to imagine that being true before having a baby. I got really caught up in the intense drug-like feeling of pursuing something that you desire more than food. I would obsess over people. Count the moments before a romantic interest would text back. That sort of thing. Before having a child, I had nothing to compare that sort of love to in its intensity.
All throughout my first pregnancy with M I thought I should be feeling more. I was frightened I would meet her and feel nothing. I have heard that happens to some people, and I didn’t want to judge myself for not having that love come naturally. But when she came, the flood of love and joy and fear, oh yes, fear, came too. I didn’t worry that she was healthy, I just worried that I wouldn’t love her. It’s so strange the things that our minds focus on when the true threat lies elsewhere.
I knew right away when I was pregnant with the second baby. We had sex once. It took years to conceive M, so we were not worried about it. I had heard stories about this, but never believed it could happen to me. Secretly, I wanted it to be true. I wanted to have it happen again so easily, and to have it just all work out in ways that seemed predestined. I had worked so hard to keep M healthy. It only seemed fair that this time, it would happen naturally.
Josh found out inside Target. I was scared to tell him. He was already having such a hard time in all aspects of his life, and I knew he didn’t want a second child. In contrast, I could feel the joy radiating out of my pores with my secret. We were there getting a few basics and on the way out, I popped over to the pharmacy section and casually looked for some pregnancy tests. He asked, “What are you looking for? I will help you find it.”
“You cannot help me find it. I don’t want you to freak out. Just be patient with me.” When I found it, and plopped it in the cart, he just stood there. In the middle of the main aisle on the way to checkout staring blankly at nothing with people dodging him on each side in every direction. Their carts full of mostly plastic junk we tell ourselves we “need” just to get by. Kids screaming. Everyone was in a hurry to get somewhere else. And at that somewhere else, their lives can start again. Target is like a really well-lit purgatory.
To be clear, I was expecting Josh to wallow. For his depression to fall back into its comfortable routine, and for him to sulk while I hid my joy. But he didn’t. I have been married to this man for 11 years and I am still surprised by his reactions to things. He said we would make it work. We could figure it out. It wasn’t the same joy that I was going through, but it was more than I expected. It was the type of support he could offer, and I am so grateful.
Oddly—and I am not sure the evolutionary purpose of this—I feel really happy the first month of pregnancy. There is this mood shift that takes me off guard. Imagine making no life changes and then all of a sudden, you feel really good. There is hope in your steps. You can laugh without force. It took some time for us to get a positive pregnancy test. Since we only had sex once, I was pretty sure of the date of conception. I tried so hard to not get my hopes up.
We did have sex a second time. But it was with protection. After our visit to Target, we spent a weekend away together with M in Russian River alone. On the drive up, we were still in that liminal space of uncertainty. And had a long conversation about the future. In it, we talked about having a second child.
For us, it was really irresponsible to have sex. For genetic reasons. I just didn’t care. On the drive up to the cabin, in the car, I gazed out over the burnt vineyards as we made the decision to not have sex without protection from now on. Not only because one of us was uncertain about if they wanted a second child, but because there is a 1 in 4 chance the baby would inherit both our mutations. Like M.
This was a responsible decision. The responsible decision. But the decision had really already been made, in the past, we just didn’t have a blue line to show for it yet.
Before, I didn’t really care about if the baby had CF or not. I loved M. I loved her so much. She completes me in so many ways. I wouldn’t trade her for anything. When she came out, there was a mystical logic that it was only her, that baby, the baby I was holding that was perfect for me. And I was hers. I would be what she needed. We would grow together. When wanting a sibling for M, I thought that in some ways it was a win-win situation—i.e., if the baby had CF they both would feel less alone. They could relate to each other. That we could be a household of taking enzymes and doing breathing treatments together. Every kid would do it. Somehow that would make it easier. If the baby didn’t have CF, M still could have a lifelong companion. Someone who would play with her during the sick times, and someone to understand what growing up by her side felt like. All win-win.
You can blame me. I watched families with two or three kids with CF on Instagram. I listened as sisters talked about how they were bonded by the condition. CF is so isolating. And having someone who is experiencing the hardships next to you could be so comforting.
They don’t recommend it. I have also read stories where siblings stand by, both with CF, and watch each other’s bodies fail them with the certain knowledge that they were next.
Actually. It is only within the last few years that the lifespan of someone with CF has expanded to 40. When M was born, it was 35 in 2019. If I had been born I would have made it to 7. Made it to a teenager, if I was really lucky. If my mother had been born with the condition most likely she would not have lasted a year.
There is this old wives’ tale that goes something like, “Beware if your baby tastes like salt. They are going to die.”
M is worth it, but her life has been really hard. She takes around 250+ pills a week, two hours of breathing treatments a day (when she is healthy and does not have a cold; in that case it doubles), and gets all her food from a g-tube (a tube that’s been surgically inserted into her belly). All of this is just to keep her going. When she was born, they likened this to “brushing one’s teeth.” For her, it is keeping her alive.
At the same time, I am extremely lucky to have her and be alive in this place and time. I know this. But it is still really painful to know all the correct ways to hold your child down for medical interventions. The way you cross your legs around them in a chair holding them like a straight jacket while they scream—screams not of pain exactly, but of betrayal. How could someone who loves them do this to them? I tell myself that if I am lucky, someday she will forgive me. Someday she will have a daughter of her own if she wants. That she will live long enough to have the choice, because of the choices I have to make now.
As I write this, in two hours and 15 minutes, I am going to leave for the hospital. I stopped eating at 9. Will stop drinking at 12. And go under at 3. Alone. But not really. I am comforted by the fact that my OB will be with me the whole time. I love her. It’s weird to say that about someone. I would never say it to her face. But I do. Somehow the knowledge that she will be with me is comforting.
Think for a moment about all the people in your life you have loved but never told. There is something so heartbreaking about it. But also, you have been loved infinitely by people. And you will never really know.
At this moment, I feel my baby kicking inside of me. I wonder what she would say to me if we were adults if I could ask her to weigh in on this situation. But I cannot. Time only moves forward. And it is hard to tell if these kicks are in protest. Or if they are in condolence. Does she agree that her life will be more painful than it is worth?
There is a complicating fact; her existence endangers M.
I said that CF is isolating. It is so because people with CF can never actually be together. Within 6 feet of each other. They all carry different infections that can very easily transfer.
M is getting over a cold. It was not just a cold. It was a runny nose. The first one she had in a year and a half. We caught it early. It is in these moments that I am really grateful for the g-tube. She started vomiting up all her food. Not sleeping through the nights. We were able to keep her hydrated because of that tube. We started her on sick treatment plan—4 hours of breathing treatments a day. This means that basically, she is either sleeping, tube feeding, or doing a breathing treatment at all times. This couldn’t stop the infection from spreading deep into her lungs and developing pneumonia. It just happened. We did all the right things. We kept her healthy. She doesn’t leave our house except for going to parks. She got this from the park. An outdoor park.
It is my understanding that kids with CF are never allowed to be in the same classroom. That they are ideally not even supposed to share the same hallways. In my dreams, I hope M gets to go to school with other kids someday. But how would it work in our house if we had two? How could we keep them separate? If they both were hospitalized at the same time which happens a lot, who would have to stay alone? On M’s first hospital stay, I vowed I would never let her be alone. I judged parents as they left their babies alone when visiting hours were over.
But that was unfair. I didn’t know what they were going through. What they had to do to get by. Who was I to judge? Life is complicated and I know deep in my heart that they were just doing the best they could for their family.
I found out the news last Friday. We had done CVS procedures to get enough tissue from the baby to diagnose that they were carrying both of our mutations. My geneticist called me. I called back. With glee and fear. Expecting that the odds were on my side. 75% chance of life is more than 25%. She delivered the news. I heard her. I didn’t understand her until later.
There is, in my opinion, no right way to deliver bad news to someone. I was dreaming about this baby. I had picked out her name. I had imagined her laugh. I had fantasized about looking into her eyes and feeling the hit of oxytocin. Last month, she had a butt. Last ultrasound, she was sucking her thumb. Drinking the amino fluid like it was water. The water that kept her going.
This was a cruel joke that I had played on myself. I knew that we had talked about the risks of having a second child with CF and that it would be ultimately best for M and our family to terminate the pregnancy. I let myself enjoy imagining being with her before I had all the information.
Josh was right. He tried not to get attached. I think in some ways it was easier for him since he was not being kicked with every sip of morning coffee. Or a bite of cake. My body is just tired. And wired for attachment even though it doesn’t always make sense.
Like 6 people gave us the book, “On the day you were born,” when M was born. It is about how special and unique you are. How all the world stops to say hi to you and greet you. To make you feel wanted and welcome. Today is the day you will be born my dear baby. Today is also the day that I will let you go.
My mother-in-law asked me yesterday how my family deals with death. I said I didn’t know. I don’t know how to deal with loss.
I was certain that this baby that I am holding inside me, so tightly, was healthy. I am certain. Still. Even after listening to the geneticist over and over tell me that the reality, in our collective reality, there is data that points in a radically different direction.
In some ways, I imagine this would be easier if the decision is clearer. If there was a cure. If there was some guarantee that life would be as hard for this baby as it has been for M. Her life could be better. But it also could be worse. Things can always get worse. There is just no way to know. The predictions made by her care team, one of whom told me that she would never consider having a second baby with CF (which she was not supposed to do, but I really really appreciate her honesty. I asked her for it) is that the new baby would have the same afflictions as M. Even though there was no way to know for certain, the chances were high.
When I was told about M, they gave me like a 1 in a million chance that she had both mutations on one strand which would mean that she didn’t have CF. And I held out hope. This happened throughout every test. They would say things like, in this case, she will be better, but not likely. And I would lay awake at night hoping that she would be the exception.
And she is. She was the one in 30,000 chance of having CF. In my mind, she proves that hard things can happen, but also that opens the door for possibilities for miracles, too.
Ok. So I am out of time. I have to go do this thing. This thing that I thought I would never do. Forgive me for making the best decision I know how to at the time. Forgive me for not knowing how to best protect the child I have. Forgive me, Josh, for wanting to keep this baby against all logic. Forgive me for trying to remain hopeful for a future that holds joy. Without you, my dear, love. Without you.
I fell asleep with you last night for one last time. I held on to you in my belly. Told you I loved you. That I wanted you in this world deeply. That you were meant to be. Just not right now. I hope the stories we tell ourselves to comfort us during loss are true. That you will be born again someday. With the advantage of a healthy body. One that lets you make all the mistakes that are part of being human.