Recently, I began noticing media coverage regarding the pandemic’s effects on mothers. Articles like “How Society Has Turned Its Back on Mothers” in The New York Times, which discussed feelings of betrayal, and “All Work No Pay” from New York Magazine highlighted the struggles many parents face. The Daily Skimm’s newsletter titled “Mother Load” further explored these issues, making it clear that these feelings of being overwhelmed are not new for parents of children with complex medical needs, especially mothers. For us, living in the unknown is simply part of our daily routine.
A little over a year ago, I penned a blog about the uncertainty surrounding the pandemic, which is a familiar concept for those of us who parent medically complex children. After enduring a year of upheaval, it’s evident that many people are beginning to grasp the complexities of our lives. I found myself wondering: could this be a moment for others to understand what it’s like to be a caregiver for a child with significant health challenges?
Before the late 1960s, children like my daughter, Mia, who has a complex neurological disorder, would have likely been placed in institutions. It wasn’t until the mid to late 1980s that the focus shifted towards community support and in-home care for children with serious health needs.
Mia required constant care. When I first heard the term “around-the-clock care,” I thought it meant any child needed that. However, Mia’s needs are far more demanding. Caring for her feels like managing a newborn and an elderly person simultaneously. Unlike a baby who might settle back down after feeding, Mia needs a host of medical interventions—medications, suctioning, and positioning, among others. The burden of care is heavy, as we don’t have nursing support or a facility to assist us.
On average, Mia needed six different medications administered multiple times a day, each with its own schedule. I transformed my kitchen cabinet into a dedicated medicine station, complete with a meticulously organized schedule. I learned to take Mia’s blood pressure, administer feeding tube changes, and even give her shots. I became well-versed in medical terms, feeling almost like an equal to the healthcare professionals we interacted with.
Connecting with other parents of children with similar conditions was a source of strength. We gathered for dinners where we exchanged stories, resources, and the mutual understanding of our overwhelming exhaustion. We all acknowledged that while we love our children deeply, the demands of caregiving can be insurmountable.
I am thankful that Mia was born in 2012 rather than 1912, as conditions for medically fragile children have improved significantly. Yet, society still falls short in supporting families like ours. Parents of medically complex children take on myriad roles—nurse, therapist, nutritionist, and more—often without formal training. While all parents have faced increased challenges during the pandemic, those of us in the medically complex community have lived under this weight for years.
As we all grapple with feelings of fatigue and overwhelm, I hope we can remember families like mine in discussions about support solutions moving forward. For some, the chaos of caregiving will continue long after the world returns to normal.
For further insights into parenting and family support, check out our related blog post on Home Insemination and explore authoritative resources like Make a Mom for more information on home insemination techniques. For a deeper understanding of insemination processes, consider visiting WebMD’s resource on IUI success.
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In summary, while the pandemic has introduced new challenges for many, families caring for medically complex children have long navigated the struggles of the unfamiliar. It is vital that as a society we recognize these experiences and work towards creating a supportive environment for all parents.
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