Over the next few weeks, I want to take the time to tell our story with infertility. For a very long time, it was a story I kept reserved for my phone notes, when middle-of-the-night insomnia would hit, and I would weep and write into this little form of journal.
A little less than a year ago, I decided it was time to start telling our story publicly. People used words like “brave” and “strong” to describe what has been the single most painful experience of my adult life. And while those are words I do use to describe myself, I would use different words to describe infertility.
I would use: lonely, forgotten, uncomfortable (both for myself and the experience of making others confront your grief, in a world that wants us to pick ourselves up and heal after hearing the words “just have faith”), inadequate (I can’t stress enough how much negative self talk I have had to silence and uproot in myself to learn to love my body again), prickly, cynical, long–interminably long.
Because it’s been 924 days. 22,176 hours. 1,330,560 minutes, since we first decided we wanted to be parents.
It was Labor Day Weekend. I always remember it, and I’m always bound to see a pregnancy announcement on that day because of the pun with labor. We had decided last minute to go to our favorite free campsite by Mt. Hood. Camping is one of our favorite things to do together. We’re really good at it. Ben handles logistics, I make sure we eat well. Together we can probably set up a tent in two minutes.
That night I threw a Trader Joe’s frozen pasta into my cast iron skillet. We ate mostly in silence, with the fire crackling in the background, and the stream that rolls through Zig Zag adding to the somber outdoors soundtrack. Out of nowhere, Ben put his fork down and said: I think I’m ready to have kids. I felt my stomach drop out of my body in much the same way that I felt when 3 years before, he had told me he wanted to get married. Both times, I was ready and I was not, all at the same time.
I’m the kind of person who usually takes initiative. I am self directed. Misogynists might call me bossy, I call myself assertive. My life motto is simple: I do what I want. In both of these cases, it made me shrink with fear to bring up the topic–afraid somehow to seem weak in my longing for togetherness and parenthood. Afraid because we had said five years, and it was only year two. I blame a lot of this on being an Enneagram 3, and sometimes arrogantly believing that people hang onto my every word, and hold me accountable to everything I’ve said I’ll do. As if we weren’t allowed to change as people.
Ben saying that into the night at Mt. Hood, will be etched into my memory forever. I was quiet for a while. Pretending to look at stars. I couldn’t, because my eyes were brimming with tears. Of fear, of relief, of love. I thought I couldn’t love him more than I did in that moment, ever. That was before I knew the hardy, resilient love that comes out of grief.
For the rest of the night we dreamed together. We dreamed of our kids. We talked about names–and their need to be easy to pronounce in English and Spanish; about hiking with them, and wanting them to learn to enjoy mountains like we do. We talked about what season we wanted their birthdays to be in, and half birthdays being necessary for summer babies so we could have parties when all their friends were in town. About no little league football (because head injuries, people!), but a family rule to try an instrument and a sport–and those would always be allowed to change, so long as we raised them to be equipped to chase the things they love.
In the next few days, I made an appointment to see my hematologist. Being an adult woman with FA is less rare these days, but pregnancies still are. For a lot of the female FA community, menopause comes early. I wanted to get a few labs done to check on my egg reserve, and to get a clean bill of health.
That appointment led to me switching my care over to another hospital network, so that all my care could be in the same place. In October of that year I met with a new hematologist, geneticist, neo-natal specialist, perinatologist and their crew of residents and fellows. I kid you not. I made an appointment to see one provider, and I walked into a small conference with 10-12 people. We met for 2 hours to establish my care plan: what to do when I got pregnant, how we would follow up on my care, planning for a pre-term delivery. They gave me a card to call a direct number the moment I got a positive test. It lived on our fridge for two years with “call when pregnant :)” scribbled on it. After we moved last April, I stuffed it in a drawer.
Because there haven’t been a lot of pregnancies with FA women, there is no set treatment plan. I had read about everything from women developing multiple cancers during pregnancy, to very pre-term labor (26 weeks), and mostly stable pregnancies.
Because I am an arrogant fool, I have always seen myself as the exception to the rule when it comes to FA. In 2013 I had been part of a study at the National Institute of Health. During a week-long stay filled with tests of all kinds, the OBGYN who had seen me said I seemed fertile enough. I took that and believed for the most part, that it would be true. Because I am myself though, I also indulged in worst-case-scenario thoughts that this process would be hard, but I mostly kept those in my brain. I was determined to be the face of an easy FA pregnancy.
After meeting with about 17 specialists that fall, we got the all-clear and decided January was a good time to go off the pill. After a month, we would be free to the lovely work of trying.
Going off the pill was liberating. Here we were, 2.5 years into marriage and before then every. single. month was riddled with anxiety about being pregnant. It’s ingrained in most women pretty early on: we are solely responsible for NOT having an unplanned pregnancy. I remember the first time I got my period after we got married, we celebrated. In the years since going off the pill, I have grown a steady and not-so-quiet rage about the ways we place blame and responsibility on women when it comes to birth control. I look back and wish we were the .01% that the pill failed.
As women, we spend so much time thinking about not getting pregnant at the wrong time, that we make pregnancy out to be this demonized experience, and then expect our bodies to fall into line if and when we’re ready. That internal dialogue that I learned, of fear and shame of being pregnant early in our marriage–it’s now replaced with sadness and grief at the irreverence I put on the experience of pregnancy. Anger at how much I cared about people thinking “wow, they didn’t wait long!” When really and truly, it is NONEYA business what happens in our reproductive life.
I waited for 67 days to get my period back. It was roller coaster for the rest of the year. Trying to figure out fertile days with an irregular cycle was just a giant guessing game. It was early days though, and we were determined to have fun and make the most of it. We told almost everyone we were trying. We were sure we’d be pregnant by Christmas. In the meantime, it seemed like people around us were looking at each other across the room and getting pregnant. That streak of competitiveness settled deep in my bones, and I cried indignantly with every announcement post.
I am one of the most decisive people I know. Humble brag. But it’s true. Once I know what I want, I do what I want. Because once I know, I know and I don’t doubt myself (you can thank my parents for this wild streak of self confidence). It was that way with marriage. Once I processed the words that came out of Ben’s mouth the first time he brought up getting married, I was team proposal STAT. My mom and sister will tell you I was the MOST impatient person in those last few weeks before he finally asked me. So it’s no surprise that when I knew I wanted to make a human to love, and challenge, and send into this world with Ben, I was ready for it instantly.
I felt a part of myself come alive and fall into place. Like all the love I poured into making sure people were nourished and full made sense. I grew a love for the way I was created to exist, because I could see underlying tones of motherhood in all the things I cared most deeply about. I would plan my kids’ birthdays in my mind, and cry in the bathroom thinking of what it would be like to watch them graduate high school, and enter a world where they get to keep building themselves.
I could clearly see groggy Ben in the middle of the night, not letting me get out of bed to do anything. I could see him laying on my favorite rug during tummy time cheering on our babe’s first roll over. I could see him walking into their rooms and quietly discussing behavior with them, in moments where I am too sassy and turnt to parent well. I could see him carrying them in asleep from the car when they are much too big to be carried in. I could see calm, kind, gentle Ben, getting fired up at coaches and opposing teams. I could see us in bed together, after a hellacious day, laughing till we cry at the sassafras kids we created together.
I have no chill. I know that. And I’m glad that I don’t, because that is a part of my mothering, too. I guess that’s one of the better parts of this whole experience: I am so confident in my motherhood and I celebrate that part of myself fully. I am released from the fears of how others’ perceive that desire in me based on my age or gender.
In much the same way, I release other women to be their full selves. I believe to the core of my being that birthing a child does not make you more woman; that womanhood is not achieved, or a higher level unlocked, if and when you choose be a mother. I believe I am as much a woman in my longing for motherhood now, as I will be when I become a parent. I believe the womanhood I possess today, is not any different than the one I had at 20, when parenting wasn’t something I aspired to. This measuring up we do to women is so hurtful and unnecessary. It is so exclusionary to relate womanhood to motherhood (or even to measure biological motherhood against adoptive motherhood–which is a whole different can of worms we’re going to talk about later). Overcoming this belief in my own mind has been the biggest mental gymnastic competition I’ve ever had to overcome, but what a gift it is to accept myself as fully woman in my infertility.
In my next post, I’ll be sharing the emotional roller coaster of waiting. Of the repetitive cycle of grief, longing, and hope Ben and I have walked through for 2.5 years now. In every way possible, it has made me love him more. In every way possible, it has challenged me to love myself more, and again. In every way possible, it has reshaped our faith; we believe in a God of no now–and no still makes Him good. It even makes Him more powerful to me, because I know He can handle my doubt, frustration, and pushback.
If you’ve made it this far: thank you. Thank you for reading into a story that can feel gritty, and hard. I’m sure for some folks, it’s simply uncomfortable. If you’re reading this as a fertile person, please know you should not be experiencing guilt. All compassion and learning is welcomed, but guilt can quite literally go to hell. I celebrate your fertility with you, and I’m so glad you have your kids.
If you’re reading this as someone who has struggled with fertility, I see you. I see you when no one asks how it’s going, but all you want to do is talk, because you’re bursting with grief. I see you holding it together at baby showers, and baby dedications, and work bathrooms when someone announces a pregnancy. Your pain is welcome here.
If you’re reading this as someone not in a position to become a parent, or with no desire to parent: you are welcome here. Thank you for taking the time to empathize and learn about something that may not be personal for you and your experience. I hope you are always, always, always given dignity for your circumstances and decisions.
Love, love, love,
Mary-Beth Johnson
Mary-Beth is a creative, food-obsessed, Georgia transplant living Chicago. She is proudly and fiercely Latina, and more specifically Chapina. In her day to day she is a food educator to students around Chicagoland aged 3 to 80+, both virtually and in-person. She is passionate about cultivating the truth that every person has an understanding of food that deserves being brought to the table, and that time in the kitchen can be sacred, passionate, and an act of love for self and others. Outside the kitchen you can find her at the intersections of infertility, chronic illness, and a deep love for the dignity of all humans. She hopes to create a space that is holistic about the role of food in the social, political, relational, and physiological dynamics of our world.
