Recently, I came across several articles discussing the struggles faced by mothers during the pandemic. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” emphasizing feelings of betrayal beyond mere burnout. Similarly, New York Magazine published “All Work No Pay,” and The Daily Skimm’s newsletter, “Mother Load,” focused on the challenges mothers are enduring. While these narratives are compelling, I couldn’t help but reflect on the reality for parents of children with medical complexities—especially mothers like me—where living in the unknown is simply part of our everyday existence.
About a year ago, I penned a blog entry addressing the uncertainty brought on by the pandemic. For families like mine, this sense of unpredictability is nothing new. After enduring a year filled with upheaval, it seems everyone now has a glimpse into what it means to navigate uncharted waters. I found myself contemplating whether this moment might allow others to understand the lives of those caring for medically complex children.
Historically, before the late 1960s, children with medical conditions similar to those of my daughter, Lily, would have faced institutionalization. Even post-1960s, there was a lack of emphasis on in-home care and community support for families. It wasn’t until the mid to late 1980s that institutions began to close, and public funding shifted toward community assistance for children with significant health needs.
Lily required constant care. Initially, I thought “constant care” applied to all children, but that couldn’t be further from the truth. Caring for Lily was akin to managing the needs of both a newborn and an elderly individual simultaneously. Unlike a newborn, however, when Lily awoke, she didn’t settle down easily after a feed; she needed medication, suctioning, diaper changes, and more. Additionally, unlike elderly patients, we didn’t have nurses or assisted living to help us. On average, Lily took six different medications, administered two to three times a day, with some spaced six hours apart and others 12 hours apart. Creating an effective routine for her care was a challenge.
In our kitchen, we dedicated an entire cabinet to her medications, complete with a schedule taped inside. Each day, I prepared her medicine, labeling syringes and marking my progress to ensure nothing was missed. I learned to monitor Lily’s blood pressure, handle feeding tube maintenance, and even administer shots multiple times a day. Conversing with medical professionals, I often felt like part of their team, akin to a self-taught nurse or doctor.
Connecting with other mothers of children with similar medical needs was invaluable. In our community, we often gathered for dinners, sharing tips and resources, while venting about our shared exhaustion. The hardest reality was the persistent lack of support—no end in sight to our challenges. We all loved our children but felt overwhelmed by the immense burden of caregiving.
I am incredibly thankful that Lily was born in 2012 and not 1912, but despite the progress we’ve made as a society, families like mine still face significant hurdles. While children today receive better care at home, the system still falls short in providing comprehensive support.
Parents of medically complex children often embody many roles: nurse, therapist, nutritionist, and more. While we may lack formal training, we have acquired these skills through intense, real-world experiences. Now, during the pandemic, all parents are encountering similar challenges, bearing the weight of extensive caregiving. This shared experience of overwhelm may foster a greater understanding of the needs of medically complex families, hopefully leading to more effective support systems in the future.
As life eventually returns to normal for most, the challenges for families like mine will persist, remaining our everyday reality.
For more insights, check out this other blog post here.
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In summary, navigating life as a parent of a medically complex child brings unique challenges, particularly during times of widespread uncertainty. While the world has recently experienced a taste of this kind of overwhelm, for families like mine, it remains a constant reality.
Keyphrase: Navigating Life with a Medically Complex Child
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