I’m Erica Stearns, and my journey into parenthood started like many others, filled with dreams of picture-perfect moments and plans for the future. In a colorful room, waiting to embrace the beautiful chaos of motherhood, the sound of a sweet lullaby began playing, signaling the birth of our daughter.
My husband and I had spent the entire pregnancy imagining this perfect moment, but reality took an unexpected turn.
As the lullaby played on, my heart sank as I listened for the cries of my newborn child. Instead of the joyous tears I had anticipated, fear overcame me, and the room transformed into a sterile and cold environment. My baby was taken from me and quickly surrounded by a flurry of medical staff. I felt completely helpless.
Time stood still and raced by, and I was frozen in a moment that should have been filled with happiness but instead, I was consumed by fear. When my daughter was finally placed in my arms, the lullaby that had played on for others felt distant and irrelevant. I couldn’t help but notice something was wrong. Her silence, limpness, tiny head, and unexplained jerking movements all raised concerns.
Instead of bonding, I was consumed by questions and worry.
As the hours passed, that lullaby thundered down the hallways, as if just to mock me. Meanwhile, I lay in a dark room, trembling from both the trauma of birth and the separation from my struggling newborn. The days that followed were a painful journey through sterile hallways, passing rooms filled with the sounds of newborns crying, flowers, balloons, and proud parents leaving with their bundles of joy.
I felt like an outsider, unable to experience the “textbook” parenthood I had expected.
Even though the medical professionals referred to me as “mama” and reassured me of my expertise on my child, I was overwhelmed by a creeping uncertainty, a gnawing doubt that I might never get to bring our child home with us.
The lullaby was replaced with the sounds of beeping machines, alarming monitors, and hordes of people crowding in to observe my child with a puzzling medical condition. I had to quickly learn how to advocate, voice my concerns, point out discrepancies, read monitors, interpret lab results, determine seizures from dystonia, listen for problematic lung sounds, and be mindful of all possible medication interactions.
My journey was that of a medically complex caregiver, an advocate, a defender, a protector, and above all else, a very tired mother.
Becoming a caregiver to not one, but eventually two children with a rare and medically complex disease, meant that I had to quickly learn to navigate the overwhelming world of medicine, genetic research, advocacy, and all the acronyms that come with this lifestyle.
I became an honorary nurse, doctor, and expert on my children’s ultra-rare disease, all while trying to figure out how to just be “mom.”
My entry into caregiving was far from graceful. My kindness and patience with the medical system sometimes led to delayed treatment and frustration. My respect for medical professionals turned into distrust as I watched my daughter suffer. I felt as though I had betrayed her for not advocating sooner, so I became fiercely defensive in my advocacy with professionals.
I immersed myself in research and data, documenting every detail of my daughter’s condition. I asked tough questions and showed no emotion when raising concerns. My walls were high, my armor was strong, and my words were sharp. The protector in me needed them to view me as unwavering and strong, but inside, I was exhausted and losing myself.
Eventually, at a different hospital, surrounded by caring and dedicated professionals who worked with hundreds of medically complex children like our own, I realized I didn’t have to do it all alone. I learned to lower my defenses and trust in the power of family partnership.
Advocacy can be a bridge, not just a battleground.
I used to think of advocacy as a fight, like we were on opposite sides. But being a caregiver changed my perspective. It showed me that advocacy can actually be a way to collaborate and build something positive together.
Instead of approaching doctors with defensiveness, I started to really listen and communicate openly. I realized that working together not only benefited my children but also made me feel like a valued and respected member of the team. We all wanted the same thing – the best for my children. By focusing on our shared goals, now we work together to create (and oftentimes, recreate) the best care plans for each child and our family.
Changing from a battleground mindset to a more respectful approach was key. Instead of focusing solely on my children’s needs, I acknowledged the expertise and dedication of the professionals involved in their care. It made for more respectful and constructive conversations and exchanges of information.
I also learned that advocacy isn’t just about asking for what my children need, it is about asking for what our family needs as well. Advocacy involves educating the healthcare team about my children’s condition and our hopes for our future as a family to thrive outside the hospital. Instead of getting upset about their lack of knowledge regarding our home life and what “quality of life” means to us, I consider it as a chance to share our story and bridge the gap.
Understanding advocacy as a bridge allowed me to seek help when I needed it.
I realized I didn’t have to do everything on my own. There were resources and professionals available to support me, including peer caregivers and mental health therapists. This shift from a solitary battleground to a bridge-building approach improved the quality of life for my family as a whole and empowered me in the process.
It took time, but I found a supportive community of professionals who understood and embraced our journey. In total, my journey into caregiving was a grueling but transformative experience. It taught me that being a caregiver was about more than just being the expert on my child; it was about trust, partnership, and finding strength in our vulnerabilities. As I advocated for my children’s needs, I realized that healthcare professionals were not just providers of care but also partners in our journey. Building trust, fostering open communication, and working together became essential components of the caregiving process.
This change in perspective helped me heal from strained relationships with medical professionals, creating a more collaborative and mutually respectful dynamic.
Becoming a caregiver profoundly impacted my own disabled identity.
Before this journey, I had never fully embraced my own disabilities. In fact, I often dismissed them. In truth, I spent most of my youth hiding, if not rejecting, the idea that my origin story started in similar circumstances as my children – unexpected diagnosis, rare congenital birth defects, and surrounded by hoards of medical professionals.
Having been born with disabilities in the mid-80s made me an outsider. The lack of empowering disability representation and the nature of disability segregation meant that I grew up in a society and educational system where I was the strange kid with a horrible nickname, the target of bullies, and the victim of various abuses. These experiences left me dreaming of being anything but disabled.
When I realized that my children would also grow up disabled, I was deeply fearful that they would experience the discrimination I had barely survived.
Through caring for my disabled children, I began to see the world from a different perspective. What I lacked in community and representation of people with disabilities, my children and I now had a wealth of. Learning from disability activists and listening to my disabled peers opened my eyes to the beauty and diversity of the human experience and helped me to advocate for a better future by challenging the societal norms and stereotypes that I once feared.
As I became deeply involved in advocating for my children’s needs, I started to recognize my own strengths and abilities as well. I learned to navigate complex medical systems, communicate effectively with healthcare professionals, and make informed decisions for my children’s well-being.
More than anything, I learned that my own experiences of growing up with disabilities in the medical system provided me with a unique perspective, which gave me the foresight to advocate for better outcomes for my children and others. This newfound sense of purpose and empowerment allowed me to view myself in a different light, not just as a mother but as a capable and resourceful CAREGIVER.
My role as a caregiver transformed my relationships with those who had previously cared for me.
Being a caregiver allowed me to develop a stronger connection with my mother and a personal understanding of the obstacles and difficulties she encountered while being my primary caregiver. Reflecting on the care I had received helped me to foster a deeper appreciation for the individuals and professionals who had supported me through my own challenges as a child with disabilities. Rather than being critical of those who had helped to raise and care for me, I began to understand first-hand the complexities of caregiving and the emotional toll it can take.
Amid uncertainty and challenges, becoming a caregiver of two children with rare diseases and medically complex disabilities has proven to be a profoundly transformative experience. Embracing the title of “caregiver” has not only enabled me to articulate my role in society but has also unearthed my inner reservoir of strength and empowered me to embrace my own identity as a person with disabilities. Additionally, it has fostered healing within the relationships I share with those who once cared for me.
As I proudly define my role as a caregiver, I find most of my strength, identity, and honor in simply being “Mom” to Margot and Cary.
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Links: Check out Erica’s other project, Atypical Truth.
