She knew how to feed when she came out. I’d rehearsed it in my mind—which made me feel like we’d both rehearsed it—and when this fresh, tiny human found her life source, I was so proud of our work.
I’d felt, through my pregnancy, a psychic line from my intentions to my womb. This was our private conduit for all sorts of talks and pre-agreements. I’d seen breastfeeding videos and books and other demonstrations, and they all showed the same steps: 1) Mama guides boob slightly inward and up towards baby’s mouth; 2) Mama lifts baby’s head and puts open little mouth on nipple, bottom lip first, then makes sure nipple is in tiny mouth before closing tiny upper lip over nipple; 3) Baby takes over. It was kind of like a nipple-as-tire-jack situation, wedging one part open so the upper part responds. I imagined this over and over and over, in the months before her birth, so that we’d be ready. And when she arrived, all 5 lbs 4 oz of her, she latched, like a parasitic angel. I was so proud of our work.
Really, it was her initiative. I provided the nutrition, and I held her, but she had to do the feeding.
A month before birth, she had to flip herself over. Months before that, during my second trimester, she just had to survive. And weeks before that, she had to take all my nutrients, my fats, and my energy—because my body had decided not to. My body had decided not to hold on any longer. My life was being transferred to her because she was the priority. Because I have Crohn’s Disease, and my body was preparing to die.
Crohn’s Disease, in a nutshell, is an autoimmune disease which announces itself through digestive pain, fatigue, and a clown car full of colorfully assorted horrors. It’s the body’s immune system turning on itself, starting with the gut. The disease personalizes its modes of torture for each sufferer—for some, there is little more than bloating, pain, and a glaze of exhaustion. For others, like me, it brings the whole show: pain, fatigue, eye inflammation with loss of vision, skin sores, arthritis, and release of blood from the nether regions, as the intestines ulcerate and fall apart.
There are nicer ways to spend one’s time.
I haven’t talked about this a lot, because honestly, I don’t like to think about it. And I don’t like to come across as the victim of anything. I don’t mind discussing struggles and difficulties, but autoimmune disease is something that just happens to some people, and things that “just happen” make for bad stories. People want a reason and a motive, but Crohn’s doesn’t have one. So, this isn’t a story about Crohn’s. This is a story about how I came to recognize my daughter as an individual, before we were separate beings, and how grateful I am for who she has always been, and for the resiliency required of both of us—all of us—for the work of simply living.
I was in remission before I got pregnant. I was not on any constant medication, and I was in good shape. I was exercising every day. I had just finished premiering a musical I had written, and the only bump in the road was a short flare (a “flare” is what we call it when Crohn’s decides to show up and be a dick).
Then I got pregnant very quickly. We were only trying for a month, and BAM: baby. So, there I was, eating well, taking my pre-natals, no coffee, no drinking, no sushi, the usual. I had the morning sickness, but not too bad. And my boobs blew up, which was very exciting. And I had no energy, because making placenta was quite rigorous. All in all, good first lap.
Teeny looked cute on the ultrasound photos. I mean, she looked like a tiny blob-being, but she was our tiny blob-being. Every measurement and every test came back perfect for her—but not for me.
My GI doctor had told me that there was a 50/50 chance my Crohn’s symptoms would subside completely, that I would go into full remission during pregnancy, because pregnancy naturally suppresses the immune system. I coasted on those odds and the self-assured demeanor of my doctor. I rode a wave of idealized pregnancy, making my delivery plan and buying cute, roomy frocks.
By the beginning of my second trimester, things began to change. I was not gaining any weight, and there were other suspicious symptoms. It became clear, without a doubt, that I was in the unfortunate 50 percent. The group who would not go into remission, at all.
One day, I was sitting at my computer, and I felt a contraction. It was abdominal, but not pregnancy related. I knew what my body was heading for. I did not want to accept it, and I was ready to fight, but I had to talk to my body, and to my girl.
I put my hand on my belly: “It’s ok to give it all to her. That’s what we’ll do, body. If it comes down to me or her, it’s her. We both know that. I’d love to stay, but I’ve had a good run, and if you’ve only got enough for one, give it all to her.”
I cried when I told this to my body, but I was not conflicted.
I made an appointment with my doctor. I had cause to trust his years of experience and to believe what he was telling me, so, I sat in the room, with my mother, and I told him about my symptoms. He did not run any blood tests on me, nor did he examine me, nor did he seem to have any real investment in getting to the bottom of my symptoms. I told him that I was about to go out of town for the holidays, and I was concerned about having a full-tilt flare while out of town, and pregnant. Once again, he brushed it off and recommended that I eat a lot, and basically, relax. The whole tone was, “Relax young lady, you’re upsetting yourself.”
I left the office feeling like I had been “handled.” Like I didn’t “look sick,” so I was not a serious case. Like it was all in my mind, like it was the turn of the twentieth century, and I was being diagnosed “hysteric.” But wait, I was a pregnant woman with Crohn’s Disease. High-risk from the get-go, no matter how pulled-together I looked.
This one doctor visit would shape the rest of my pregnancy.
We went up north for the holidays to be with my husband’s family. I tried to mind-over-matter it. I stayed positive through Christmas, knowing that we’d be home in a few days, but things were getting worse.
At 1am, the morning after Christmas, I snuck downstairs and sat on the floor, near the Christmas tree, in the darkened living room. I called my mom. When she picked up the phone, I broke down. I was whispering because I didn’t want to wake the house. I wanted to speak louder, but I had to whisper, not just for the sake of the family’s sleep, but because I was scared and ashamed.
So often, in our culture, sickness is shameful. If you are sick, you are weak, and it’s your fault. Especially if you are an expectant mother, you cannot be ill, because then you are betraying two people. Also, I didn’t want to own what was happening. This was my worst nightmare, that the flaw in my body, this randomly sorted genetic punishment, would negatively affect my daughter. I felt guilty.
A few days later, we landed back in LA. As soon as I stepped in the door, I was on the phone to my doctor and my OBGYN. Both were booked up for two weeks and could not see me. Really? A pregnant woman with a bleeding Crohn’s flare is not red-flag enough to make some space?
I realized I was hot. We took my temperature. I had a fever. So we went to the ER.
All I wanted to know about was the girl. Had I bled her out? Had I been mal-absorbing for so long and lost so much blood that she was starved? We were in ER-waiting-room purgatory, so I had several hours to think about all of this. Once I was admitted, I got wheeled forwards down a hall, then sideways into an elevator, then backwards into a room with enough screens, plugs, and tubes to make a Borg blush. (Yeah, that’s right. In the middle of a life-and-death story, I just dropped a Star Trek reference. You are welcome.) Anyway, they took blood, asked questions, but honestly, I don’t remember any of it beyond a blur, until they brought in the imaging machine.
They put the monitors on me and pressed some buttons, and we waited for the image of my baby. I was trying to prepare for anything, but I couldn’t prepare. I was worried that we’d see a listless shadow, a tiny silhouette, weak in the dark. We waited, and then we saw.
Teeny?
She was not simply there, but vibrantly there. I was the listless shadow—she was doing flips! Actual flips. I couldn’t believe the ridiculous loops, this playful absurdity in the eye of my storm. She was absolutely fine. I cried with Husband. I didn’t care what came next.
OK, I sort of cared what came next, because it involved many tubes in the back of my hand. They took so much blood, I imagined they were bringing it next door to a vampire frat party. After that, a doctor came around with a team of medical students who looked at my butt. The indignities one endures, in times of strife.
Really, it was just boring, sleeping in the ER, getting woken up every few hours to take more tests. Emotionally, I felt better because I knew my girl was well, but my body was still ailing, progressively.
As it turned out, the ER doctor, from the team of doctors who looked at my butt, prescribed a medicine which turned out to be ineffective for me, because it was for a different type of Crohn’s. So, for two weeks after the ER, I continued to weaken. I became bedridden. Once I finally got my GI on the phone, he prescribed the proper medicine, but it was two more weeks until it cleared my insurance.
That period, in the middle of my second trimester, was the loneliest time of my life. My effort of the day was to put on sweatpants and slowly, at the mercy of the banister, climb downstairs. Then I could sit at the dining room table and work on illustrations for my mother’s upcoming book. It was my one creative outlet. The rest of my life was pain management, with the few medications that are safe for pregnancy. I could tell you more of the hideous details about what happens with an unchecked auto-immune disorder—the multiplication of leg sores, the external ulcerations in all of the most fragile areas, the shame and the pain of that…but the isolation was the burden. And the interminable stillness of my life.
I talked to Teeny about it, with my hand on the round wall of her house. I told her that all this was OK with me, if she got what she needed. Either I would go back into remission, and she would never know me like this, or she would never know me at all. As long as she arrived.
January and February passed. I switched my entire medical team. New GI doctor, and new OBGYN. The new GI was a woman who also has Crohn’s, so she understood all the symptoms and how they connected. And she listened to me. I’m making a point to say this because I want women, and their partners and their families, to know that you are not necessarily beholden to the doctors you have been seeing since the start of pregnancy. If your doctor is not listening to you, if you feel talked-down-to, or dismissed, you don’t have to put up with that. It’s not just about the baby—MOTHERS, your health matters. Your baby will agree with that.
You know those commercials where there are five seconds of a happy person doing normal, in-the-park-with-friends stuff, and the narrator starts talking about how (insert disease name) can hold you back from your best life? But when you take (insert drug name), you can do the frisbee and the laughing and the autumnal sweater and the polite social laughter? And then the visuals continue, while the narrator goes on for 30 more seconds of legal disclaimers about why nobody should ever take this medication?
My new GI doctor prescribed that medication.
The super-artificial-scary-pharmaceutical-lab-juice arrived. And it worked.
In my imagination of several months before, my gestation and birth plan had looked like an issue of Fit Pregnancy, culminating in a natural, drug-free birth, with me breathing, in high consciousness, on a bed surrounded by a bunch of hippies, burning sage.
God laughed at those plans.
As I sat there with the four starter shots of this serious drug, piercing my thighs, I released all the expectations. My Earth-mother scenario was now the medicated-AF scenario. This release, this willing relinquishment of the plan, was my first lesson in parenting. Teeny was already showing me that parenting is 90 percent adapting.
As I improved, Teeny grew, Teeny kicked, Teeny hung out in the bottom right quadrant, making knee circles. I had started to visit a high-risk OBGYN, who did sonograms, counted kicks, and stuck suckers on my tummy to audio-spy on Teeny’s heartbeat. She was a smart, friendly woman who radiated calm and kind of a pagan-forest-nymph, Tori Amos vibe. A professional nymph in a lab coat. Such a lovely change from what I’d experienced before. She told me that I would have to come in twice a week until I gave birth.
It got tedious with all the strapping-on of the monitors, and the sitting, and the medical beeps and buzzes, but I felt that I shouldn’t complain, given how well I was now doing. Still, every session got a little more monotonous, and every session, Teeny got a little more active. This was great for the technicians, but she wasn’t trying to do anyone a favor. Mommy wanted to be easygoing and deferential; Teeny gave no such fucks. On the last session of fetal heart monitoring, she started a kick session. She began with a few rumbling warm-ups, then launched the monitor right off. She booted the thing, square on, from the underside. It bounced up, fell, and hit the ground. The fetus had expressed herself. This was how she felt. The technician came in to find me laughing and giving a high-five to my abdomen.
My mother has always talked about my quiet birth, how I barely made a sound. For my girl, I was hoping for something more than I’d given, to reassure me that she was strong.
When it was time, we had to do a C-section, slightly premature. I felt the pressure on my abdomen, and then the pressure released, and from over the top of the hanging medical screen, between the green-gloved hands of my doctor, she rose, illuminated with sound. She arrived, screaming, into world. Flailing. I was relieved and proud. They wrapped her in a bundle and placed her tiny face next to mine, and she became quiet, and I sang her a song, “You Do Something to Me” by Cole Porter.
You do something to me
Something that simply mystifies me
Tell me, why should it be
You have the power to hypnotize me?
Let me live ‘neath your spell
Do, do that voodoo that you do so well
For you do something to me
That nobody else could do
When they wheeled us into the next room, skin to skin, I didn’t know what to do with my little, warm alien. Then the nurse said, “You can feed her.” So, I pulled her over to the left.
I’d rehearsed it in my mind, which made me feel like we’d both rehearsed it. I placed her on my breast, and this fresh, tiny human found her life source.
I was so proud of our work.
***
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