On Tuesday morning as I was driving back from dropping my oldest daughter Autumn at the airport, my phone rang. It was Libby’s day nurse. “Libby is behaving strangely. She vomited and I can’t get through to her. I suspect she is having seizures. I’m really scared. What do you want me to do?”

We continued to assess the situation. She turned on the speaker so Libby could hear my voice. Normally, Libby responds to my voice with sounds as she doesn’t have language skills but this time — silence and the sound of my racing heartbeat. We decided to meet at the Emergency Room. As I drove over Highway 17, my hands trembled on the steering wheel and tears uncontrollably streamed down my face. Anxiety gripped me, she was in danger, and I was unsure if I would arrive in time to advocate on her behalf.

I wondered, is she leaving us? Is this the end?

My body shivered as I stepped into the frenzied atmosphere of the ER. Scanning the blur of people, my eyes locked on Libby and her nurse at the reception desk. She wasn’t foaming at the mouth but her head jerked spastically to the left, her eyes vacant — unresponsive. Recognizing the urgency of the situation, they allowed us to postpone the usual administrative intake process, directing us to roll her into room fourteen to be examined. We quickly secured her on the bed.

I wedged myself to the end of the bed to cradle her head in my hands to apply the cranial sacral therapy techniques I had learned years before. A constant tremor coursed through her body; her head set in an unnatural position.

Amidst the chaos, I repeated softly, “Libby, it’s Mama. I’m here, I got you. I’m not going anywhere.” My voice cut through the clamor of five medical technicians that swarmed around her like bees, attaching monitors, inserting an IV, drawing blood, and prepping her for a CAT scan. Questions poured in from all sides, and we answered, “This is far from normal, something we had not witnessed in Libby before.” While I held her head in my hands, the tremors gradually subsided until they ceased entirely.

At the recommendation of Dr. S, I consented to a mild sedative, uncertain of its necessity or what mild meant but hopeful it might offer her additional relief. Dr. S probed and prowled further with questions I hadn’t anticipated. “What if her heart stops? What if her lungs collapse? Do you want to attempt resuscitation?” My eyes widened. I inhaled and exhaled to regulate my nervous system and remain present.

At that moment my mind flashed back to twenty-six years ago when the obstetric team at Stanford Hospital chose to resuscitate Libby twice at her tragic, three-month premature birth when she was merely one pound. Her quality of life (and ours) has been compromised and marginalized ever since. I replied, “Are you asking if I want her to have less function and engagement with life than she has now? Are you suggesting life support?”

Reflecting on the coercive tactics and lack of informed consent when I was admitted to Stanford against my will, captive to the industrial medical complex and their shady decisions, I felt a surge of jaguar medicine pulsing through my body, empowering me to track the situation closely and remain calm. “Hmmm, I’ll need some time to consider that.”

It’s not that I haven’t contemplated the potential demise of Libby’s condition before, but now, my nervous system has a new pathway. One that puts me in charge. After we returned from the CAT scan, Doctor S returned with bulldog determination to find something. He wanted to draw additional blood despite Libby already enduring hours of poking and prodding. As I felt her begin to relax, I declined the additional blood draw. “Enough for one day.” When the room was empty, I switched off the lights and hummed a favorite tune. She relaxed into sleep, but her rest was continually disrupted by abrupt knocks at the door, voices over the intercom, or the beeping of machines. Six hours later, Doctor S returned to explain their findings. “Vitals are normal, no brain bleed, and her lungs and heart are fine. The Covid test is negative.” Yet he insisted on admitting her to the hospital overnight ‘just in case…’ while citing their uncertainty about the situation.

I listened with an open mind but couldn’t help but notice gaps in their reasoning and my problem with the phrase ‘just in case.’ Why are they so determined to find something when all of the tests thus far are negative, and she is showing signs of improvement? I expressed my preference to take her home. “You’re putting her at risk by taking her home,” he countered. “I’m putting her at risk if I keep her here,” I responded resolutely.

I was prepared to accept the consequences of my decision. As he left the room, I could tell he was not happy with my choice. I’ve moved far beyond the old groove of appeasing and pleasing. No apology. I’m done. Over the next hour, different staff members returned to the room in an effort to convince me to admit my daughter to the hospital, reminding me that my non-compliance put her at risk. In other words, “You’re being an irresponsible mother.”

Libby’s eyes popped open each time they entered the room and she groaned as if to say leave me alone, which confirmed my choice. As she went back to sleep, I shook off the pressure, jumped up and down, and told myself, You’ve got this, Mama Bear. You’re in charge. Don’t let them bully you into doing something that you know isn’t safe for Libby.

Once it became evident that I was not going to admit Libby, the male nurse on duty returned to remove the monitors and devices she was hooked up to. Despite having taken her temperature rectally just fifteen minutes earlier, he insisted on doing it again. I expressed my concerns as Libby was weak and agitated from having the tape torn off her delicate skin, she needed rest. Without listening, he proceeded, tipped her on her side, and inserted the thermometer asserting, “She won’t like this, but it’s fine.”

I was seething with indignation and howled, “Fine for you!” Thank you for illustrating precisely why I refuse to leave her in the care of medical professionals who behave like predators and prioritize interventions over sensitivities and well-being. Full stop. I could zoom into this moment to explore the factors that contribute to this type of bad behavior toward marginalized individuals but I won’t. I believe you see the situation —it’s exhausting, unacceptable, and criminal.

In the final round, Dr. S made it abundantly clear that he was not on board with my choice to take Libby home. He insisted that I sign a form acknowledging my decision to go against his diploma-fueled medical advice. I was happy to self-assuredly say no to a high-ranking doctor. Standing to protect my daughter felt exhilarating, incredibly liberating, generative, and wise. Before leaving, he hoped that I would consent to a course of antibiotics and an anti-seizure medication called Levetiracetam twice a day for thirty days ‘just in case’ (see precautions at the base of this essay). I agreed to the anti-biotics, as it was clear she had an infection which induced vomiting, fever, and over-taxed her nervous system.

However, the question, of whether she was having seizures remained unanswered. During the time I was alone with Libby, I contemplated the early days of our time under the care of Dr. Zhu, a neurological acupuncturist who treated Libby for clonus (an abnormal reflex response that involves involuntary and rhythmic muscle contractions). He educated me on brain injuries and how sensitive nervous systems might respond to stimuli. Dr. Zhu explained that a seizure is often the body’s way of throwing something off that it is not able to digest. In creating safety, the nervous system is able to slow down, rest, and digest. I learned to attend to Libby’s early trauma by nurturing her nervous system and supporting myelination, a developmental process that she still needed to shelter her nervous system like a glove. 

I wasn’t willing to subject her to pharmaceutical experimentation. I called a close friend to meet us at the ER to drive us back home. During the ride home, I tracked the sensations in my body. Despite the coercive encounter with the doctor, I remained calm and resolute, firmly anchored in my body. It felt like a small triumph to make a decision that dared to challenge the medical establishment.

Naturally, I could have been mistaken, but through the years, I’ve realized that when the default answer to an unidentified issue is pharmaceuticals, I must rely on my lived experience with my body and my children. I placed my trust in myself and advocated with unwavering certainty for Libby’s well-being and safety. We are home now because this Mama Bear with fresh Jaguar blood did not fall prey. She stood in her power, prowled about, sniffed out the situation, disagreed, and was able to choose not to please or appease the industrial-medical complex and their additional interventions of “JUST IN CASE.”

I was not argumentive or aggressive — I was free to disagree and not be coerced/shamed/made small and powerless. I stayed present in my body. When all the different folks (and there were many as they did every test possible) left the room, I shook myself off, jumped up and down, and said, get ready for round 3 “You got this.”

That night Libby slept in my bed with me. She was still uncomfortable, stiff, and not her usual happy self. I snuggled her beside me with a hand on her belly and listened to her gentle breathing. She didn’t engage with me but I know she knew I was with her in a liminal space of silence, in between worlds, a time of transition where we often draw close and words aren’t needed.

Eventually, she drifted off to sleep, throughout the night she moaned and sweated profusely. By morning, her pajamas and my bed were drenched. Over time, her muscle tone relaxed, she began to eat, and symptoms of distress dissipated. Dr. S. called the next morning to check on Libby. I missed his call but after three attempts to call him back, I spoke with him directly and provided an update. I told him she sweated through the night as if her body was purging and that she was returning to her normal state. He continued to push for me to admit her to the hospital. Again, I said, “That won’t be happening. I prefer to keep her home and follow up with her regular doctor.”

Later that day, the ER nurse contacted me with the results of Libby’s blood work. Her white blood cell count was elevated and the blood culture didn’t show anything serious.

On the second day home Libby was hungry. She ate well. Her giggles returned along with other typical jovial behaviors. As scary and physically taxing as this health emergency was, as it unfolded, I recognized many changes in how my nervous system responded. I remained present throughout the situation and the days that followed with calm alertness, grounded in my body, my power. Instead of teetering on the edge of fight, flight, or fawning, the entire experience generated a solid sense of embodied wisdom and confidence.

This wasn’t the case twenty-six years ago when I was helicoptered to Stanford Hospital and became ensnared in the clutches of the medical-industrial complex. It was a harrowing experience that systematically eroded my spirit and sense of agency. At the time, the resources I had cultivated for the birth such as my first ecstatic home birth and midwife were prevented from assisting me. I was alone, disempowered, and subjected to bullying, coercion, and dubious monitoring, forced into procedures without informed consent. The cumulative effect was an unnecessary C-section of seriously injured one-pound babies to care for.

Initially, when I chronicled this ordeal and the consequences in Edge of Grace, I shouldered the weight of self-blame and hypervigilance to fix them, as if I was in control and had committed a horrible crime. It has taken many years to shed this self-imposed blame and replace it with self-love and compassion. It was not my fault yet it is my responsibility to learn and be wizened by this experience.

By sharing our story, I wish to prevent similar medical interventions that cause harm, advocate for informed consent, and contribute to the restoration of natural and ecstatic birth initiations that empowers mother, baby, and families for an integral healthy life. Many years ago, during my graduate studies at Boston University School of Theology, on a regular basis, I encountered an intriguing message on my mentor’s office door that is applicable now. It is called ‘Life in Five Seasons’ and went something like this: You walk down a street and fall into a pothole. You walk down the same street and fall into the same pothole. You walk down the same street, see the pothole, and walk around it. You walk down the same street see the pothole, observe it for a while, learn from it, and walk on.

You walk down a different street, a new path.

In the context of this story, let’s liken ‘life’ to the street, and ‘potholes’ to the unconscious patterns we stumble into, which subsequently etch grooves into our nervous system and habit bodies. Falling prey to former habits without awareness can happen easily to the extent that the pothole seems like a predator that hunts us when we least expect it.

Until one day, we see these potholes and observe the habitual patterned grooves and their consequences. We wake up and muster the courage and resources to remain calm and observe our behavior, nervous system, and bodily sensations. Through our presence coupled with compassion and keen observation, the groove begins to smooth out and transmute. We are more able to relax, rest, and digest our experiences which in turn generates profound wisdom for life. Our habitual reactions evolve into responses — we are more embodied.

We recognize that we have the agency to choose, and we get to choose on our own time not on the medical-industrial complex’s timetable but according to our observations, research, deep knowing, and connection to who we are. Eventually, we find ourselves empowered to walk a different path in life altogether, infused with vitality, confidence, wisdom, and self-love.

There are always opportunities for repair, step by step we encounter opportunities to mend ruptures and wounds that happen in life. Medical trauma, specifically birth, is our first and most important relationship with life. It is a delicate and exposed moment that impacts the entirety of who we are and our capacity to engage with life. In the journey of healing birth trauma, it is vital to remember our inherent tenderness and vulnerability as we mend and reclaim our wholeness. The first step is giving our story a voice, verbally or in writing, and taking care to sense and resource spaces of safety, support, and kindness for healing.

 

Become an advanced reader for Edge of Grace, Fierce Awakenings to Love (revised edition). This promo gifts you with a free E-book by entering the code GRACE (all caps) HERE. The promo ends October 14th. Please submit a short honest review to Amazon to support our story. Due to unforeseen circumstances by book’s public publication date is delayed to November 13th when the moon is in Scorpio the foremost sign in my astrology.

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Source Notes: Mayo Clinic. Drug information provided by: Merative, Miromedex Levetiracetam is used alone or together with other medicines to help control certain types of seizures (eg, partial seizures, myoclonic seizures, or tonic-clonic seizures) in the treatment of epilepsy. This medicine cannot cure epilepsy and will only work to control seizures for as long as you continue to use it.

Before using: In deciding to use a medicine, the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make.

Precautions: It is very important that your doctor check your or your child’s progress at regular visits, especially for the first few months you or your child are using this medicine. This is to see if the medicine is working properly and to allow for a change in the dose. Blood tests may be needed to check for any unwanted effects.

Levetiracetam may cause changes in mood or behavior, problems with coordination, or unusual tiredness or weakness. Tell your doctor right away if you or your child start to feel depressed, anxious, angry, getting upset easily, restless, or have thoughts about hurting yourself. Report any unusual thoughts or behavior that trouble you, especially if they are new or getting worse quickly. This medicine may cause some people to become dizzy, drowsy, tired, or less alert than they are normally. Do not drive or do anything else that could be dangerous until you know how this medicine affects you.

This medicine may cause serious allergic reactions, including anaphylaxis or angioedema, which can be life-threatening and require immediate medical attention.

Call your doctor right away if you have a rash, itching, large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs, trouble breathing or swallowing, or any swelling of your hands, face, or mouth while you are using this medicine. Serious skin reactions (e.g., Stevens-Johnson syndrome, toxic epidermal necrolysis) can occur with this medicine.

Check with your doctor right away if you or your child have blistering, peeling, or loosening of the skin, chills, cough, diarrhea, itching, joint or muscle pain, red irritated eyes, red skin lesions, sore throat, sores, ulcers, or white spots in the mouth or on the lips, or unusual tiredness or weakness while you are using this medicine. Do not stop using levetiracetam without first checking with your doctor.

Question: What about a child who does not have the capacity to communicate?