Recently, I stumbled upon various articles discussing the toll of the pandemic on mothers. One piece from The New York Times was titled “How Society Has Turned Its Back on Mothers,” emphasizing the sense of betrayal many feel. New York Magazine featured “All Work No Pay,” while The Daily Skimm’s newsletter, “Mother Load,” examined this pressing issue. Among these discussions, I couldn’t shake the thought that for parents of medically complex children, particularly mothers, this feeling of navigating the uncertain is part of our daily reality.
Just over a year ago, I penned a blog reflecting on the uncertainty brought about by the pandemic, a sentiment that resonates deeply with those of us caring for medically complex children. After a year of upheaval, it’s clear that many people now have a glimpse into the challenges we face daily. I can’t help but wonder if this shared experience might bridge the gap in understanding for those who have never walked in our shoes. Could the world finally grasp what it means to be a caregiver for a child with complex medical needs?
Before the late 1960s, children like my daughter, Emma, who has a complex neurological disorder, would have been placed in institutions. Even after that period, support for families caring for such children at home was minimal. It wasn’t until the mid to late 1980s that institutions began to close, and public funding started to prioritize community support for children with significant health challenges.
Emma requires constant care. When I first heard the term “around-the-clock care,” I thought it applied to all children. While every child needs attention, the reality for Emma is much more demanding. Caring for her feels like juggling the needs of a newborn and an elderly person simultaneously. Unlike a typical baby, when Emma wakes up, she doesn’t just go back to sleep after feeding and diaper changes. Her needs are extensive: medications, suctioning, repositioning, and more. We lacked the nursing support that families of elderly individuals might receive, which made her care even more challenging. On average, Emma takes six different medications two to three times a day, each with its own schedule. Over time, I created a system to manage her medications, complete with a dedicated cabinet and a chart to track dosages.
I became adept at taking Emma’s blood pressure, managing her feeding tube, even administering daily injections. I often conversed with medical professionals using terminology that made me feel like I belonged in their ranks, despite not being formally trained.
In connecting with other moms of medically complex children, I found a sense of camaraderie. We’d gather for dinners in St. Louis, sharing resources and advice while also expressing our exhaustion. The weight of our responsibilities felt insurmountable; we all wanted to care for our children, but the relentless demands left us drained. It was more than mere burnout; it was overwhelming pressure that had no clear resolution.
While I am thankful that Emma was born in 2012 and not 1912, our society has indeed evolved, yet many families still struggle. Children today receive better care at home, but the challenges faced by medically complex families remain significant. Parents like me wear many hats—nurse, therapist, nutritionist, and more. We may not have formal qualifications, but we’ve learned on the job through necessity.
Now, as all parents face challenges brought on by the pandemic, I hope this shared experience will lead to a deeper understanding of the struggles faced by medically complex families. We’ve all felt the weight of caregiving, and as the world moves towards normalcy, I hope we remember those who will continue to carry this burden.
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In summary, navigating the complexities of raising a medically complex child is often a daunting journey filled with challenges. The current global situation has shed light on the struggles many families face, and it’s crucial to foster understanding and support for these caregivers.