Two weeks ago, I began seeing news articles discussing how the pandemic has affected mothers. The New York Times featured a piece titled “How Society Has Turned Its Back on Mothers,” subtitled “This isn’t just about burnout, it’s about betrayal.” New York Magazine published “All Work No Pay,” while Daily Skimm devoted its lead section in the newsletter “Mother Load” to analyze the situation. These headlines caught my attention, and amidst the discussions, I couldn’t help but think, this isn’t a novel experience for parents of children with complex medical needs, especially mothers; this is simply our everyday reality.
Just over a year ago, I penned a blog post reflecting on the uncertainty brought on by the pandemic. That feeling of unease is something medically complex parents are all too familiar with. After experiencing a year of upheaval due to the global crisis, I believe many have begun to understand what it means to navigate the unknown. As I consumed the coverage, I found myself pondering whether this was a chance to bridge the gap for those who can’t truly grasp what our lives entail unless they live it. Are people finally getting a glimpse of what it means to be a caregiver for a medically complex child?
Before the late 1960s, children like Lily (my daughter, who has a complex neurological condition) would have faced institutionalization. Even after that, in-home care and community support were largely overlooked. It wasn’t until the mid to late 1980s that institutions began closing nationwide, redirecting public funding toward supporting families with children facing significant health challenges.
Lily needed constant care. I used to hear the term “around-the-clock care” and think, well, all kids require that, right? While that’s true, caring for Lily was an entirely different experience. It felt like managing both a newborn and an elderly person simultaneously. However, unlike a newborn who often goes back to sleep after feeding and changing, Lily required medication, suctioning, diaper changes, repositioning, and constant interaction. And unlike families with elderly relatives, we didn’t have nurses or a nursing home to assist us. On average, Lily needed six medications administered two to three times daily, with some requiring specific timing that took time to organize. We dedicated a cabinet in our kitchen just for her medications, and I had a schedule taped to the inside of the door. Each day, I’d prepare a tray, label syringes, and ensure each medication was accounted for with a checkmark next to my schedule. I even became skilled in taking her blood pressure, swapping feeding tube buttons, and administering shots multiple times daily. I often spoke in medical jargon, feeling like an equal among healthcare professionals, even though I wasn’t formally trained.
Meeting other moms with children who have similar health needs as Lily was incredibly validating. We often gathered for dinner in St. Louis, sharing resources and advice while lamenting our shared exhaustion. The most challenging part was the lack of support – there seemed to be no end in sight. While we all willingly took on the care of our children, the extreme sleep deprivation and 24/7 responsibilities were overwhelming. It felt more than just burnout; it was an unbearable weight for a single family to carry.
I am thankful that Lily was born in 2012 and not 1912, as society has made significant strides, yet we continue to fall short in supporting families like ours. Historically, there was much abuse and neglect, and the emotional toll of separation was devastating. Today, children are safer and better cared for at home, and I wouldn’t want to revert to the past. However, we must do better.
Medically complex parents wear many hats beyond just mom or dad – we become nurses, physical therapists, nutritionists, and more. While we may not have formal qualifications, we’ve gained invaluable skills through intense on-the-job training. Now, with all parents facing similar demands, we must acknowledge that it’s simply too much. As we all grapple with this overwhelming experience, I hope we can keep families like mine in mind as we seek solutions to alleviate the burden on parents, especially mothers. While life may return to normal for many, for some, this overwhelming reality will remain the norm.
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In summary, life as a caregiver for a medically complex child often involves navigating constant challenges and responsibilities that extend beyond typical parenting. The recent global pandemic has brought some of these experiences to light, allowing others to gain a glimpse into our daily realities. While we hope for a return to normalcy, it’s essential to remember that for many, this overwhelming experience remains our everyday existence.
Keyphrase: Medically complex child caregiving
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