Two weeks ago, I noticed various news articles discussing the struggles faced by mothers during the pandemic. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” emphasizing a sentiment of betrayal rather than just burnout. New York Magazine ran a headline “All Work No Pay,” while The Daily Skimm explored the challenges in a section called “Mother Load.” As I read these stories, I couldn’t help but think that for parents of medically complex children, especially mothers, this sense of navigating the unknown is a familiar experience.
Just over a year ago, I penned a blog post reflecting on the uncertainty brought on by the pandemic and how it mirrors the everyday realities for those caring for medically complex kids. After enduring a global crisis that flipped our lives upside down, many have come to understand what it means to exist in uncharted territory. I began to wonder if this newfound awareness could help others comprehend the lives of medically complex caregivers, who often feel isolated in their experiences.
Historically, before the late 1960s, children with conditions similar to my daughter Mia’s would have faced institutionalization. Even after that time, little emphasis was placed on supporting families at home. It wasn’t until the mid to late 1980s that institutions began to close and resources shifted toward community support for children with significant health issues.
Mia needs constant care. When I first heard the term “around-the-clock care,” I thought it applied to all children. While all kids require attention, the reality for Mia is vastly different. Caring for her feels like managing both an infant and an elderly person simultaneously. Unlike a typical baby, Mia doesn’t settle back to sleep after being fed or changed. Her routine involves medication, suctioning, diaper changes, and constant repositioning. Without professional help, I found myself coordinating her care alone. Mia takes around six different medications multiple times a day, each with specific timing requirements, and creating a system to manage it all took time and effort. My kitchen became a pharmacy, complete with a schedule taped to the cabinet door.
As I learned to monitor Mia’s blood pressure, administer shots, and even handle feeding tubes, I felt a kinship with other parents facing similar challenges. In our St. Louis group, we would gather for meals, sharing resources and stories. Our conversations often shifted to the depths of fatigue and burnout we experienced. Despite our willingness to care for our children, the relentless demands made it unsustainable. The pressure was overwhelming.
While I’m thankful Mia was born in 2015 rather than 1915, our society still has a long way to go in providing support for families like ours. Although children today are certainly safer and better cared for at home, the ongoing challenges persist.
Parents of medically complex children take on numerous roles—nurse, therapist, nutritionist, and more. Although many of us lack formal qualifications, we have acquired these skills through necessity. In recent times, all parents have had to step up significantly in their caregiving roles during the pandemic, and the burden can feel unbearable. Now that more people understand this level of overwhelm, I hope we can prioritize solutions to support families facing these intense challenges.
As we gradually return to normalcy, it’s crucial to remember that for many, the overwhelming nature of caregiving will remain a daily reality.
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Summary
The article reflects on the challenges faced by parents of medically complex children, particularly during the pandemic. It highlights the unique demands and roles these caregivers undertake and emphasizes the need for societal support in addressing their overwhelming responsibilities.
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