Recently, I came across various articles discussing the challenges mothers face during the pandemic. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” highlighting feelings of betrayal rather than mere burnout. New York Magazine‘s article “All Work No Pay” and The Daily Skimm‘s newsletter “Mother Load” further explored this pressing issue. As I read through these pieces, I couldn’t help but think that for parents of medically complex children, particularly mothers, this struggle is a part of our daily reality.
A little over a year ago, I shared my thoughts on living with uncertainty due to the pandemic, a concept that is all too familiar for parents like me. After enduring a year of upheaval, it seems everyone has begun to understand what it’s like to navigate the unknown. As I absorbed the coverage, I wondered if this was a chance for those outside our world to gain insight into the lives of medically complex caregivers.
Before the late 1960s, children with conditions like my daughter Mia’s (who has a complex neurological disorder) faced institutionalization. Even after that, in-home care and community support were minimal. It wasn’t until the mid-1980s that focus shifted towards community resources for children with serious health needs.
Mia required constant care. When I used to hear “around-the-clock care,” I thought it applied to all kids. However, caring for Mia was akin to managing a newborn and an elderly person simultaneously. Unlike a typical baby, after feeding and changing, Mia didn’t simply go back to sleep; she required medication, suctioning, repositioning, and much more. There were no nurses or facilities to assist us; we were entirely on our own. Mia needed about six medications administered multiple times a day, each with precise timing. I created a system in our kitchen dedicated to her medications, meticulously tracking everything with a schedule taped inside a cabinet door.
I learned to take Mia’s blood pressure, perform routine medical tasks, and even give her injections. Engaging with medical professionals, I often spoke their language, feeling like an unofficial nurse. When I connected with other moms of children with similar health challenges, I found camaraderie in our shared experiences. We often gathered for dinner, validating each other’s struggles and exchanging tips, but also lamenting our exhaustion and the overwhelming responsibility we faced without respite.
While I am thankful Mia was born in 2012 and not 1912, I recognize that our society has made strides yet continues to fall short in supporting families like ours. Children today are safer and better cared for at home, but we still face challenges that demand attention.
Medically complex parents assume numerous roles – from caregiver to therapist to nutritionist – often without formal training. Similarly, all parents have had to adapt during the pandemic, taking on multiple responsibilities. The pressure can be overwhelming, and I hope that as society moves forward, we can address the needs of medically complex families, recognizing that for some, this intense burden will remain their everyday reality.
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In summary, navigating life with a medically complex child is filled with unique challenges that can often feel isolating. As society grapples with its own difficulties, I hope there’s a greater understanding and support for families like mine who face these realities daily.
Keyphrase: Medically Complex Child Care
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