I wish this was the turning point in our story in which I could reassure my readers that we swiftly found the magic potion for Elle to drink while simultaneously switching to a gluten free diet like all the celebrities with autistic kids have spouted to be their answer to saving their child from the dark side but this has not been our story. Don’t get me wrong, I obsessively searched for that elusive magic potion under every boulder, walked down many a dark alleys, climbed the highest of altitudes and swam to the bottom of the sea searching for the answers, searching for the reasons, searching for Ellie’s remedy.
As any good mother would do, I also blamed myself for my daughter’s fate. I was scarred to death that her microcephaly was caused by something I had done during my pregnancy and it was too late to take it back. When you google search causes of microcephaly the most common contributing factors that scientist have determined so far are maternal exposure to infectious diseases such as toxoplasmosis, the one you can get from cleaning the cat litter box. Other potential known causes are genetic mishaps and exposure to environmental toxins. Environmental toxin such as drugs. Drugs. Drugs ? Fuck.
No, I was not a drug user. I did not smoke weed, drink alcohol, except for a few cold sips of my husband’s Hefeweizen, and I was not a closet meth or heroine user. In fact I was afraid of drugs and medications, especially anti-depressant/anxiety medications.
Ugh. Here is where it becomes harder for me to tell my story. This is personal. No one walks this earth without their fare share of bumps, bruises or scars; myself included. And I have no interest in rehashing my childhood in a public forum. In spite of our current cultural norm to share everything with everyone on social media, I still believe that some things should be protected and kept sacredly private. Let’s just say I had an unusual childhood. Extraordinary opportunities as well as unmentionable, complicated and confidential challenges.
As with everything in life our childhood experiences, good or bad, become the framework of our adult human existence whether we like it or not. The good news is that as adults, we have the choice as the sun rises each morning, to deconstruct aspects of our framework that no longer serve us or add value to our lives. Not easy but definitely a goal worth working toward. For me personally, I had some serious rebuilding to do. A strive for perfection and power, combined with a sprinkle of “genetic tendencies” equaled an obsessive mind that zeroed in on irrational fears. Fears of mental illness because an unknown schizophrenic paternal grandfather whom my grandmother had escaped when my father was a toddler . Stifling fear of passing any exam while studying nursing at Hopkins and midwifery at UW. Fear I was not good enough; not my body, not my chosen career, not my income and not my life partner. These thoughts were never invited, they just showed up at my front door every day ready to play. And many nights, the nights that I was able to fall asleep soundly, these fears sometimes haunted me in my dreams leaving me feeling anxious, insecure, and preoccupied the next day. Sink or swim. I always choose swim.
As with everything in life, the flip side of this coin was the gift of a brain which relentlessly produced the drive towards being my best self, to set goals and go after them systematically and to encourage all of those around me to do the same whether they liked it or not. Just ask Tim….
It has taken me years to learn to how to work with my brain and I hope and pray for the most part my mind, heart and soul has figured it out. Therapy, yoga, journaling, best friends, exercise, water, and Unisom have been key players in my life game. But when I was newly pregnant with Ellie I had just started on a SSRI in an effort to magically fix my obsessive patterns. It was one of the older ones, Paxil, which was supposed to ameliorate symptoms of OCD. As always, I would obsess about taking the medication and only take the smallest amount possible, half of a half of a half. Seriously. As soon as the pink + + was revealed on my home pregnancy test, I was off of Paxil and carried on as I had done in the past learning and working with my brain in an effort to find the peace my mind and my soul were begging me for.
Inevitably in the first months after learning of Elle’s fate, I was convinced it was the Paxil that caused Ellie to be microcephalic. My husband and my best friend tirelessly and repetitively tried to reassure me that it was not the cause and that even if it was the cause, it did not matter. They loved Ellie just the same. But I was not having it! Bullshit. It fucking mattered to me because how on earth could I continue to exist if it was my fault Elle was “not normal”. I had my blood drawn to confirm I had not recently been exposed to toxoplasmosis. My mom had our well water tested to prove that there were no unsafe elements in our well water. So it had to be my fault.
As time went by I began to rationalize in my mind that thousands of women taking anti-depressants in pregnancy and their babies are not microcephalic. This concept seemed to settle down my brain and I began to most heavily lean on the idea that we just don’t have an exact answer. Not an easy feat for an obsessive mind to achieve. Every once in awhile I would fixate on my use of Paxil during the first few weeks of embryonic development but was able to move forward and let it go. Until one day. One day when I was a baby midwife and finally had made it to the big leagues at one of the most highly acclaimed OB-GYN practices at Sacred Heart. As part of a long lived tradition, the private clinic that I worked for flew a group of their providers to Seattle in early December for a Washington state OB conference. They spoiled us with accommodations at the down town Hyatt and we wined and dined at the finest restaurants. I was thrilled to be a part of this experience and felt validated for all of my hard work climbing the ranks in the medical world.
One morning as we were all sitting in one of the conference ball rooms, the guest medical researcher made a statement that froze my heart. My senses went into over drive as I put down my porcelain coffee cup and listened to her following theories. Babies of mother’s with anxiety may go on to develop neurologic conditions affecting their development. Right there. She said it. My deepest fear was confirmed. My heart was no longer frozen, now it was pounding and I began the mental check list I had implemented countless times in the past, to calm myself down. I started doodling on the handouts, redirecting thoughts to the Holiday season, and rationalizing the fears that persisted. It did not work.
After the talk, we all gathered up our belongings and headed to lunch at one of Seattle’s finest seafood restaurants. I was fairly new to this group but had grown to feel comfortable with all of the doctors even though I was “just a nurse-midwife”. (Fear of not being good enough). Wine and appetizers were flowing and everyone was making small talk. As much as I tried to quiet my brain after the statements during the morning lecture, my insides were spinning. Finally I worked up the courage to engage with one of the doctors across the table from me. He was sort of like an older brother, always kind but also in a way, untouchable. I definitely had a lot of respect for him and knew that he was a straight shooter.
Before I knew it, I was sharing with him amongst the chatter at the table, what had upset me so much during our morning session. It was at that moment, everyone stopped talking and turned their heads in our direction. I began to tremble from the inside out. He locked into my words and with out missing a beat stated what I so desperately longed to hear. “There is no way that you caused Ellie’s condition. This is what upsets me about these lectures. Broad and generalized statements being made with out any scientific facts or evidence to support. Don’t you for one second believe that you, or anything you did, had anything at all to do with your daughter’s diagnosis. ” I could feel the pressure valve release immensely while the tears filled my eyes. Then, an older physician who was sitting to my left also became tearful. He took my hand, looked deeply into my soul and fed me the spiritual medicine that every ounce of my being craved. He said we don’t always no why these things happen, and it is certainly has nothing to do with what a beautiful vibrant healthy mother like you did or did not do during her pregnancy. There are just some things in life we can not explain and our humanly task is to learn acceptance until one day god reveals to you the answers you are seeking.
I am forever grateful for this moment on this journey.