Recently, I stumbled upon articles discussing the pandemic’s impact on mothers, such as The New York Times’ piece “How Society Has Turned Its Back on Mothers,” which highlighted feelings of betrayal, and New York Magazine’s “All Work No Pay.” The Daily Skimm also featured a lead section titled “Mother Load,” analyzing the struggles faced by mothers during this time. As I read these accounts, it struck me that for parents of medically complex children, this feeling is not new; it’s a part of our everyday reality.
A year ago, I penned a blog post about the uncertainty brought on by the pandemic, a sentiment that resonates deeply with those of us raising children with complex medical needs. After living through a year of upheaval, many are finally gaining insight into the challenges we face. I wondered: Could this shared experience foster understanding among those who have never walked this path? Is the world beginning to appreciate the life of a medically complex caregiver?
Before the late 1960s, children like my daughter Lily, who has a complex neurological condition, often faced institutionalization. The focus on in-home care and community support didn’t emerge until the late 1980s, following the closure of many institutions.
Lily requires constant care. When I hear the term “around-the-clock care,” I used to think all children need that, but it’s a different reality for Lily. Caring for her often feels like managing both a newborn and an elderly individual simultaneously. When she wakes up, it’s not just a matter of feeding and comforting; it involves administering medication, suctioning, changing, repositioning, and much more. Unlike an elderly person, we don’t have nursing assistance readily available. The complexity of her care often means administering six different medications multiple times a day, each with strict timing requirements. I developed a meticulous system to manage her medication, complete with a dedicated cabinet and daily schedules.
As I connected with other mothers of children with similar health issues, I found a community. We would gather for dinners, sharing resources and experiences, but often the conversation turned to our shared exhaustion. There was no foreseeable end to our challenges, and while we all willingly cared for our children, the burden of continuous 24/7 caregiving felt overwhelming.
Despite the progress made since the past, we still face significant challenges today. Medically complex parents wear many hats, often acting as nurse, therapist, and nutritionist—all without formal training. In recent months, all parents have had to adapt to being everything for their children amid the pandemic, and it has been a heavy load for many. Now that we share this understanding of overwhelming pressure, I hope we can focus on supporting medically complex families as we seek solutions to ease the burden on parents, especially mothers. For some, life may return to normal, but for others, the feeling of being overwhelmed will remain a constant.
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Summary:
This article reflects on the challenges faced by parents of medically complex children, drawing parallels to the broader struggles experienced during the pandemic. It emphasizes the need for greater understanding and support for these families while advocating for solutions to alleviate the overwhelming responsibilities they bear.