Recently, I stumbled upon various articles highlighting the struggles mothers face during the pandemic. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” emphasizing feelings of betrayal rather than mere burnout. New York Magazine‘s article “All Work No Pay” and The Daily Skimm‘s newsletter section “Mother Load” further explored these themes. As I absorbed this coverage, I couldn’t help but reflect: for parents of medically complex children, especially mothers, this experience is all too familiar; it’s our everyday reality.
Over a year ago, I penned a blog about the uncertainty brought on by the pandemic, a situation that resonates deeply with medically complex families. After enduring a year of upheaval due to COVID-19, many are now getting a glimpse into the challenges we’ve always faced. I wondered, could this be a moment for others to understand the unique pressures of caregiving for medically complex children?
Before the late 1960s, kids like my daughter Emma, who has a complex neurological disorder, would have been sent to institutions. Even after that time, in-home care and community support were severely lacking. It wasn’t until the 1980s that institutions began closing and public funding started to focus on supporting families with children who have significant health needs.
Emma required constant care. The term “around-the-clock care” carried a different meaning for us. While all children need attention, caring for Emma felt like managing a newborn and an elderly person simultaneously. Unlike a newborn, Emma didn’t settle down after her basic needs were met; her routine involved medications, suctioning, diaper changes, repositioning, and more. We didn’t have the luxury of nurses or nursing homes to assist us. On average, she took around six medications two to three times daily, each with specific timing requirements. I had to devise a meticulous schedule, often scribbling notes and checkmarks to ensure I administered everything correctly. I became skilled in taking her blood pressure, changing feeding tubes, and even giving her shots three times a day. Together with other parents of medically complex children, I found validation in our shared experiences, even as we lamented our exhaustion and burnout. The struggle felt endless.
While I am thankful Emma was born in 2012 rather than 1912, I recognize that society has made significant strides, yet still falls short in supporting our families. Children today are far better cared for at home, and I would never want to revert to the past. However, challenges remain.
As medically complex parents, we wear many hats—nurse, therapist, dietitian, and more—often without formal training. In the current climate, all parents are facing unprecedented challenges, feeling overwhelmed and stretched thin. With the world now aware of this intense pressure, I hope we can prioritize support for medically complex families as we seek solutions. While life may return to normal for many, for some, the overwhelming nature of caregiving will remain their norm.
If you’re interested in learning more about navigating the complexities of parenthood, check out this insightful blog post. Additionally, resources like IVF Babble provide excellent support for those on this journey. For parents seeking ways to boost fertility, consider visiting Make A Mom for authoritative guidance.
In summary, living with a medically complex child can be an isolating experience fraught with challenges. However, it is also one that fosters resilience and strength among families. As we all navigate these turbulent times, it is crucial to remember the unique burdens borne by parents of medically complex children.