Do you think it is true that when one thing in your life goes well, the rest of it falls apart? That life has a certain unknowable balance?
I had always expected parenting to be hard. I watched my parents, I listened to my friends. I thought I knew what it would feel like to lose myself in the entry of a new being into the world. I resolved that having a baby in these times was almost a luxury (in my demographic: lower-middle-class city-dwellers with the option of family planning). You had to have the time, the will, the right biology, and the means.
I also looked at having a baby as an investment—something that would pay off in time with joy, and perhaps a little help when we got older. I have so much love for my parents, and wondered what it would be like on the other side. How did love work from the beginning on?
Way back in 2010, I started seeing someone. He was tall, dark and weird, just like I like them. Ten years my senior, he had his life together. At the time, I was without a job, living for free with a 64-year-old man, and up to my head in grad school debt. I fell fast, telling him I loved him after just two months, and moving myself in with him shortly thereafter. I had had several long-term relationships before him that were all harder and more dramatic than they needed to be. With him, things just worked. He listened to me when we argued, he packed my lunches for work. He made his bed in the mornings. The timing was right.
But, were we right for each other? I guess it is just a matter of perspective.
He had always wanted a baby. I was torn. He was not a believer in collaboration. For projects to truly work, he thought there always had to be someone in the lead—that no two people could have the same role, and totally equal footing. But having a baby, he said, would be a way for us to truly collaborate on a genetic level.
I agreed that in five years we would talk about having a baby. In the meantime I focused on building a business and the years, well, they passed. Love songs paint a picture that growing old with someone is something that happens slowly; that time rolls on at a snail’s pace. However, I feel like they left out the part where as you age, your perception of time moves faster.
Suddenly, we were getting older. It seemed like the last chance to do it.
The story I was telling myself at the time was that while I wanted kids, I was scared of the commitment. I wanted to be both an artist and a mom. Was that possible? And I didn’t want to live my life out of fear, like I am so inclined to do. So I resolved to lean in and let it happen if it did. At the time, I pushed the worries back. Reframed them to make the decisions I was making feel right. Even if there was no way to know if they actually were.
It took two years to get pregnant. Turns out for us, you needed to have way more sex then we were having. Scheduling it around cycles was also helpful—we always scheduled it around work.
But I was lucky. My pregnancy was normal. My therapist thought it would be a good idea to start couples counseling not because we needed it—we felt we were doing great—but because when the baby came, it would be good to have a few special tools in our kit.
Everyone I know who has gone to couples therapy has said it is transformative, bringing them closer (or farther apart) in ways that turned out to be better for everyone in life’s long run. For us, it wasn’t. Since we had never really had any hard times, we thought communication was our strong suit. It seemed like we would be able to maintain our individual perspectives while gently situating ourselves in the other’s place. I thought I understood him.
But, can you ever really understand someone? Our therapist made us talk openly about our expectations about being a parent: we both wanted to have meals together. I wanted to go on walks together. I also wanted to sleep together. He did not.
As the pregnancy dragged on, I started to feel inspired despite the extreme fatigue. I said “fuck it” and just made what my mind wanted to in the moment. I didn’t think too far ahead. I told myself time would be tight when the baby arrived, and felt like this would be the last time I would be able to make anything just for the pure joy of making.
As stereotypical as it sounds, I let myself just paint. Looking back on what I was doing, I now notice they were all sumi ink drawings of couples with flowers blooming.
Alongside these hormonal surges of inspiration, I obsessed over how my body was working on the most complicated project I would ever make. I was in total awe of how all my life I thought I was in control, but really the smart one was my body. It felt like a new center of control and creation had taken over, and my consciousness was not allowed inside.
My nature seems to be anxious; I use worry as a coping mechanism. The theory with this way of thinking is that if you imagine a worst-case scenario, you will be prepared in the event that it ends up happening. Worrying is like taking a proactive approach to bad things.
Despite this, at the time, I felt a strong sense of certainty—a sense one should probably never have about anything—that the baby would be healthy. To combat the already accelerating fears of all the unknowns a child brings, I knew she would be ok and took every healthy scan as a sign from god* that she was going to be perfect. And all the scans lined up and pointed straight towards a confirmation of my faith*.
*I don’t know what I mean by this term. I am an atheist.
*I suppose it is a belief in an unseen, natural order of things.
Big Bloom with lady in vase, 2019 sumi ink on arches cold press 16×20 inches
Grief has a formula. As humans, we feel like our experience is special, that we are unique. And it is (and we are), to an extent. The flip side is that because we are all unique, in the end, none of us are.
About three weeks after she was born we received the news that she had Cystic Fibrosis. He was out of town at the time, and I was home with his mother. I was delusional. I would lay in bed at night praying for this not to be true. I thought, if I had ever asked for anything in life, it would be for all this to be a mistake. She was meant to be unique, special, and live a long and healthy life.
Statistically speaking, she is the exception. She is the 1 in 10,000. I shamed myself for falling for the illusion of certainty, trusting that the odds were in our favor.
Testing for CF has many levels. The first test was a newborn screening, run by a public health program in California that screens all babies for many serious genetic disorders. I remember when they did it I thought, “She has already been screened for everything and she is perfect, why are we doing this?” But we did it anyway. The next step was a poop test. People with CF often have issues with nutrient malabsorption. Finally, we did a sweat test. All the tests were positive. Not to mention she had not gained any weight since birth.
Looking back, it all seems to make sense. Her story is not uncommon for people with the genetic condition. We knew he was a carrier. But we didn’t know that I had a unique gene mutation that would also turn the disease “on.” Six months later, her treatments and hospital stays have been and are intense. Currently, she has about eight hours of medical treatments (including tube feedings) per day. That doubles when she is sick. My carpal tunnel is back from doing chest percussions (which feels like beating her) two to four times a day for a half hour each time.
It has been so hard. Harder than I could have ever imagined. “Having kids is not for the weak of heart” has been my new motto. Being her mother is by far the most difficult emotional labor I have ever experienced. And yet, simultaneously, we have been extremely lucky. Currently, her health is stable. With the treatments and medications, we just got the news that she is too fat (her dietitian did not use that term). This feels like a great problem for us to have, since we spent six months trying to get her little body to gain weight. It is amazing to know that something we are doing is working.
Lady holding a plant with stairwell, 2019 sumi ink on arches 18×26
Depression is a sneaky guy. He slips into the room slowly and then before you know it, takes over the conversation. Before the baby, we had always agreed that whoever was down, the other person had to be strong for the both of us. I guess our approach was that whoever got sad first was entitled to feel down, and then the other person had to pick up the pieces. There was no plan in place for what would happen if we were both entitled to an extreme low.
Everyday I thought to myself that we might lose the baby, and if we did, I would have to go too. A short time after her diagnosis, I went to the only person I felt like I could talk to, my obgyn. I told her I was thinking about killing myself.
She wouldn’t allow me to leave her office until I made an appointment with a psychiatrist. She exited the room from time to time to go put an IUD into another patient or whatever, while I sat in her office sobbing. At the time, it felt like I had to be strong; that showing anyone how I really felt would just bring other people down and make things harder than they already were. So I bottled it up. We were all trying our best.
The psychiatrist upped my drugs. And in about two weeks, I was able to function and be an advocate for our daughter. Apparently people don’t take you seriously when you are constantly in a state of panic. When the drugs kicked in, what I longed for started happening: I was able to do her treatments, enjoy her smiles, take her on walks, give her baths, sing her my favorite pop songs, fight with insurance over coverage, and lull her to sleep with self-help books about raising good humans.
While all this was happening, I was not going through it alone, but I felt alone. He was doing the best he could at the time, coping in the ways he knew how to. He slept. And played video games. I was lucky that he didn’t leave me. In the past, men tended to do that in these situations, or so I am told. Maybe some still do.
When the virus hit, our relationship was already on shaky ground. The resentment had been growing between us for some time, even though having a baby was supposed to bring us closer.
Project management is something that both of us have to do on a daily basis. He manages a team of architects, and I manage a small business. Neither of us does well when we feel like we’re being managed by someone else. In our grief, we both took things way too personally. We started keeping score. “You didn’t do the dishes.” “I feel like I can’t do anything right, so I do nothing.” “You are not enjoying our daughter.” “If it wasn’t you, this wouldn’t be happening.” “Get off your phone.” “The baby is crying, how can you just sit there?”
We used to have things in common. We would go to art shows, visit museums, watch Saturday Night Live. Build stuff together, talk about theory, giggle at night before bed about random stuff and eat well-dressed salads. He is ticklish. I love tickling him. I know it is a form of torture, but sometimes I just cannot help myself.
On a Monday in March 2020, we got the news that Oakland was ordered to shelter in place. Like most people, I was terrified. It made it all seem so real in ways that were abstracted before. “Where were you when it happened?” I feel like people will ask us this for generations to come.
We stayed in place with a new order of things. The rooms felt smaller, the food lost its taste, and I cannot say when it happened exactly that we stopped laughing at night before bed. I would undress to change into my pajamas and shelter my body from him, even though he was not paying attention. I was reading all about how people were coming closer since life had forced us all to slow the fuck down. But things didn’t feel that way to me. When he spoke, I took steps away from him.
We stopped sleeping together. Or I should say, we would go to bed at different times. If we happened to roll over onto the other person, we would push them back to their side. It feels oddly ironic to be physically confined to another’s presence, yet feel worlds away.
All the while, since she was born, love has been changing for me. Pregnancy was a scary time. I spent so much time worrying about not loving the baby. That happens to some people, and I wanted to be ready, prepared. Just in case.
But I loved the baby. I loved the baby so much that I walked in fear that something would take her away from me. It’s so weird to think back to when she was just born, and to recreate that love in my memory. It felt so strong at the time, like it couldn’t be possible to have a stronger love than what I felt in that moment. And yet, my love grows and expands every passing second with her.
Sometime in the not so distant past, humans discovered a shrimp species with 12 different color receptors (receptors for detecting light and turning it into energy). Humans have three of these receptors, dogs have two, some birds have four. There is a Radiolab podcast about this little shrimp. When I first heard it, I imagined what it would be like to see with this range of color.
This baby has highlighted the fragility of life for me. I am savoring the tender, fleeting, and miraculous moments we have together with a new sense of presence and wonder. Kind of like seeing a rainbow for the first time.
Do you think it is true that when one thing in your life goes well, the rest of it falls apart? That life has a certain unknowable balance? I feel like I was taught that love should endure in the sort of way where it plateaus at a high point, and just lasts there. But I am learning to accept that like everything else, perhaps love has its cycles, blooming only when it is ready.
Right now, we are in the space of trying to come back together while locked in a tiny house. When we sleep, I dream of times when we were close; times in the future when we may come back together. And sometimes, what is real in my mind is more real than what is actually going on outside.
Lady comfort in flowers with pink, 2019 sumi ink and acrylic on arches cold press 18×24