Recently, I came across several articles discussing the pandemic’s effects on mothers, including a piece in The New York Times titled “How Society Has Turned Its Back on Mothers,” which captured a sense of betrayal alongside burnout. Similarly, New York Magazine’s “All Work No Pay” and The Daily Skimm‘s “Mother Load” newsletter tackled these issues. As I absorbed the coverage, I couldn’t help but reflect that for parents of medically complex children, particularly mothers, this experience is not new; it is simply part of our everyday reality.
A little over a year ago, I shared my thoughts on living with uncertainty due to the pandemic and how that mirrors the experiences of medically complex parents. After enduring a year of upheaval, it seems many are finally catching a glimpse of what it means to navigate the unknown. This led me to wonder: Could this moment offer a chance for others to understand the challenges we face daily as caregivers? Is the world starting to grasp what it entails to be a parent of a medically complex child?
Before the late 1960s, children with medical conditions like those my daughter Lily faces were often placed in institutions. Even after that time, the focus on in-home care and community support remained minimal. It wasn’t until the mid to late 1980s that significant changes occurred, with institutions closing and public funding beginning to support families caring for children with serious health needs.
Lily requires continuous care, which is a phrase that often leads to confusion. While all children need attention, for Lily and others like her, it is a whole different level of commitment. Caring for her feels akin to managing the needs of both a newborn and an elderly person simultaneously. Unlike a typical newborn, Lily doesn’t settle back down after a feed; her needs are constant and multifaceted, including medication, suctioning, diaper changes, and repositioning. And unlike elder care, we do not have nursing support to assist us.
Managing Lily’s medication regimen is a complex task. On average, she takes about six medications two to three times daily, with some requiring administration at specific intervals. I developed a meticulous system just to keep track, complete with a cabinet dedicated to her medications and a detailed schedule taped inside the door. I learned to measure her blood pressure and even give her daily shots at times. In conversations with healthcare professionals, I often felt like an equal, conversing fluently in medical terminology.
Connecting with other parents of medically complex kids in my area has been incredibly validating. We gathered for meals, exchanged resources, and shared our exhaustion. The reality is, while we all willingly care for our children, no one can endure such relentless demands without support. It feels overwhelming – a burden that is often too much for a single family to bear.
While I’m incredibly thankful that Lily was born in 2012 rather than 1912, it’s disheartening that our society still falls short in supporting families like ours. There has been significant progress in care, yet more work needs to be done. Medically complex parents wear many hats: nurse, therapist, nutritionist – often without formal training. In these trying times, all parents have faced similar challenges. We have had to be everything for our children during the pandemic, which can feel insurmountable.
Now that so many have experienced this level of overwhelm, I hope we can keep families like mine in mind as we seek solutions to alleviate the pressures on parents, especially mothers. Life may return to normal for many, but for those of us with medically complex children, this feeling of being overwhelmed is just another day.
If you’re looking for more information on home insemination and related topics, check out this excellent resource on pregnancy and home insemination. For those interested in tools for this journey, you might find this home insemination kit to be an authority on the subject. Additionally, explore more about the process on our blog.
Probable Search Queries:
- Home insemination kit options
- How to manage a medically complex child
- Support for parents of special needs children
- Coping with caregiver burnout
- Resources for medically complex families
In summary, life with a medically complex child has its unique challenges, and while many have gained a glimpse into this world during the pandemic, our ongoing struggles and needs should remain a priority in discussions about support for families.