Recently, I came across various articles discussing the challenges mothers face during the pandemic. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” highlighting feelings of betrayal rather than just burnout. New York Magazine published “All Work No Pay,” while The Daily Skimm dedicated a section to exploring the “Mother Load.” As I read these accounts, it struck me that for parents of medically complex children, especially mothers, this struggle is a regular part of our lives.
Over a year ago, I shared my thoughts on coping with uncertainty during the pandemic, reflecting on how familiar these feelings are for those of us with medically complex children. After a year of upheaval, it’s clear that many are now experiencing a taste of our daily reality. I wondered if this shared experience might help others gain insight into the lives of medically complex caregivers, who often navigate challenges that are hard to understand unless lived firsthand.
Prior to the late 1960s, children like my daughter, Mia, who has a medically complex neurological disorder, would likely have been institutionalized. Even after that time, there was little emphasis on in-home care and community support. It was not until the mid-1980s that institutions began to close, and focus shifted towards supporting families of children with significant health needs.
Mia requires constant care. When I first heard the term “around-the-clock care,” I thought all children needed that. While it’s true that all children require attention, for Mia, it is an entirely different scenario. Caring for her felt like managing both an infant and an elderly person simultaneously. Unlike a typical baby, Mia doesn’t settle back down to sleep after a feeding and diaper change; her needs are far more complex. She requires medications, suctioning, repositioning, and so much more throughout the day. Without the help of nurses or a nursing home, this care falls solely on us.
On average, Mia takes around six medications two to three times a day, with some needing to be spaced apart by hours. I devised a meticulous system to manage her medication, with a dedicated cabinet in our kitchen and a schedule taped to the door. I would prepare her doses, check off completed tasks, and keep track of everything diligently.
Meeting other parents in St. Louis who share similar challenges has been incredibly validating. During our dinners, we would exchange tips and advice, but we often found ourselves lamenting the exhaustion and burnout we faced. While we would do anything for our children, the relentless demands of caregiving can feel insurmountable. It’s more than just burnout; it’s an overwhelming weight that no family should have to bear alone.
I am thankful that Mia was born in 2012 rather than 1912, as societal attitudes have evolved. However, we still have a long way to go in providing adequate support for families like ours. Medically complex parents take on numerous roles—nurse, therapist, nutritionist, and more—often without formal training. The pandemic has intensified these demands for all parents, and I hope that as we move forward, we can develop solutions that consider the unique challenges faced by medically complex families.
For additional insights, you can read one of our other blog posts here. Also, for those exploring options for pregnancy, Make a Mom provides a comprehensive overview of at-home insemination kits. Another excellent resource for understanding the IVF process can be found here.
Summary
Caring for a medically complex child, like Mia, comes with unique challenges that have only been amplified during the pandemic. As the world faces similar feelings of overwhelm, it’s crucial to remember and support families who navigate these complexities daily. While parents everywhere are stepping up during these uncertain times, medically complex families often shoulder an additional burden, one that requires understanding and systemic change.
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