Recently, I’ve come across various articles discussing the pandemic’s effects on mothers. One piece from The New York Times titled “How Society Has Turned Its Back on Mothers” highlights feelings of betrayal alongside burnout. Similarly, New York Magazine featured an article called “All Work No Pay,” and The Daily Skimm‘s newsletter, “Mother Load,” took a deep dive into the issue. While these discussions are crucial, I couldn’t help but reflect on how this sense of uncertainty isn’t novel for parents of medically complex children; it’s part of our everyday experience.
A little over a year ago, I penned a blog post about the uncertainties brought on by the pandemic, recognizing that this notion is something medically complex families are all too familiar with. After a year of upheaval, I believe many have gained insight into the challenges of living in the unknown. As I absorbed these discussions, I pondered whether this moment could help bridge the gap in understanding for those who have never walked this path. Are we finally providing a glimpse into the realities faced by caregivers of medically complex children?
Before the late 1960s, children with conditions like my daughter Lily’s, who battles a complex neurological disorder, would often be placed in institutions. Even after that, there was minimal focus on in-home care or community support for families. It wasn’t until the mid to late 1980s that institutions began to close nationwide, and public funding shifted towards community support for children with significant health needs.
Lily required constant care, a reality I used to think was the same as all parents experience. However, for Lily and others like her, the situation is entirely different. Caring for her felt like juggling the needs of both a newborn and an elderly person. Unlike a newborn who might return to sleep after being fed, Lily needed a complex routine of medications, suctioning, diaper changes, repositioning, and more. Additionally, we didn’t have the support of nurses or a nursing home to assist with her care. On average, Lily took six or more medications at two to three intervals daily, some spaced six or twelve hours apart. Developing an effective system took time and dedication.
I created a dedicated cabinet for Lily’s medications and taped her schedule inside the door for reference. I meticulously prepared her doses, labeling syringes and checking off each medication as I administered them to avoid confusion. I learned to monitor Lily’s blood pressure, change feeding tube buttons, and even give her shots multiple times a day. I became familiar with medical terminology, conversing with professionals as if I were one of them.
In connecting with other mothers of children with similar health challenges, I found a group that shared my journey. Together, we exchanged invaluable resources and advice over dinners, but we also spent a lot of time discussing our exhaustion and feelings of burnout. The hardest part was the realization that there was no respite in sight; the pressure of constant caregiving was immense.
While I am grateful that Lily was born in 2012 instead of 1912, it’s clear that society has made significant strides, yet we still fall short in supporting these families. The past was fraught with neglect and abuse, and I wouldn’t want to return to those days. However, we must acknowledge that the current system is inadequate.
Medically complex parents wear many hats beyond the roles of mother or father—nurse, therapist, nutritionist, and more. While many of us may not have formal qualifications, we have developed skills through rigorous on-the-job training. During the pandemic, all parents have faced similar challenges, needing to be everything to their children. The overwhelming nature of it all can feel unbearable. Now that many have experienced this intensity, I hope we can consider medically complex families as we seek solutions to alleviate the burdens on parents, especially mothers. Life may return to a semblance of normalcy for most, but for some, this overwhelming experience will continue as their everyday reality.
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