Two weeks ago, I began noticing articles discussing the struggles mothers face during the pandemic. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” emphasizing that the issue goes beyond mere burnout; it feels like betrayal. Meanwhile, New York Magazine ran “All Work No Pay,” and The Daily Skimm highlighted the topic in their newsletter, “Mother Load.” As I read these headlines, I couldn’t help but reflect that for parents of medically complex children, particularly mothers, this sense of struggle is not new; it’s simply our everyday reality.
A little over a year ago, I shared my thoughts on living with uncertainty during the pandemic, a concept that resonates deeply with medically complex parents. After a year of upheaval due to the global crisis, it’s evident that many have tasted the challenges of living in the unknown. As I absorbed the media coverage, I pondered whether this could be a moment of connection for those who can’t truly grasp our experiences unless they walk in our shoes. Could the world finally gain insight into the life of a medically complex caregiver?
Before the late 1960s, children with conditions like my daughter Lily’s would have faced institutionalization. Even after that time, there was little emphasis on in-home care or community support. It wasn’t until the mid to late 1980s that institutions began closing, and public funding shifted towards supporting children with significant health needs in their communities.
Lily requires constant care. When I used to hear the term “round-the-clock care,” I thought all children required that. While it’s true that all kids need attention, the reality is that caring for Lily is a unique challenge. It’s akin to raising a newborn while also caring for an elderly person. Unlike a typical infant, when Lily wakes up, she doesn’t just go back to sleep after eating and a diaper change. She needs medication, suctioning, repositioning, and constant stimulation. And unlike the elderly, we don’t have nursing assistance to help us with her needs. On average, she takes six medications two to three times daily, each with specific timing that requires careful organization. I have a dedicated cabinet in our kitchen just for her meds, complete with a schedule taped inside the door. Each day, I meticulously prepare her medications, checking off my list to ensure I don’t confuse them—a mistake I learned can happen easily. I’ve become adept at checking her blood pressure, changing feeding tube buttons, collecting urine samples, and even administering her shots multiple times a day. I often found myself speaking in medical terms during discussions with professionals, feeling like an informed equal—though I’m just a dedicated parent.
When I connected with other moms of children with similar health needs, I was consistently impressed by their skills and knowledge. A group of us in Chicago would meet for dinner regularly, and those evenings provided much-needed validation. We exchanged resources and shared stories about our exhaustion and burnout. The hardest part was the lack of support; there was no end in sight. Each of us would willingly care for our children, but the relentless demands of sleep deprivation and 24/7 caregiving felt overwhelming. It was more than just burnout; it was an immense burden that no family should bear alone.
While I’m thankful that Lily was born in 2012 rather than 1912—when there was much abuse and neglect of children with her needs—our society still has a long way to go in supporting these families. Children today are safer and receive better care at home, and I wouldn’t want to revert to past practices. However, we can’t continue on the current path without addressing the needs of medically complex families.
Parents of medically complex children often assume many roles: nurse, physical therapist, occupational therapist, and nutritionist. While most of us lack formal qualifications, we have learned through experience—a form of intense on-the-job training. Every parent has faced challenges during the pandemic, needing to be everything for their children, and it has been too much. Now that many of us understand this level of overwhelm, I hope we can keep medically complex families in mind as we seek solutions to ease the burden on parents, particularly mothers. While life may return to normal for most, for many of us, this overwhelming reality will remain a constant.
If you’re interested in further exploring the topic of home insemination, check out this informative blog post. Additionally, for a deeper understanding of assisted reproductive technology, this article on in vitro fertilization is an excellent resource. For expert insights on this subject, visit Intracervical Insemination.
For those searching for additional information, consider these queries:
- What are the challenges of parenting a medically complex child?
- How to manage care for a child with special needs?
- What resources are available for families with medically complex children?
- Tips for self-care for parents of special needs children.
- How to create a care schedule for a medically complex child?
In summary, while the pandemic has highlighted the struggles of many parents, those of us caring for medically complex children have long been navigating these challenges. As society moves forward, it’s crucial to recognize and support the unique experiences of these families.