Loving Large

Neuroscience tells us that the human brain’s amygdala offers very few options when we are under threat: fight or flight and, some researchers argue, freeze. But there is another crisis response, equally primordial, available to the most selfless of wretches—parents of sick children. Endure is the universal stress response for parents of kids who experience seemingly unconnected symptoms that baffle the best doctors.

When a grenade went off in my life, in the form of a diagnosis I thought only existed in medieval folklore, all my previously used crisis responses were rendered absurd: Fight – a desperate parent of a chronically or critically ill child engaging with the medical system is like a mouse confronting an elephant; Flight – because we love them, perhaps even more because they have health challenges, running is out of the question, because that would mean abandoning our child to confront the unthinkable alone. If they cannot run, neither will we; Freeze – to stand still would be to waste critical time, which our invisible foe might use to overcome our vulnerable son or daughter and take him or her from us.

So, we endure, and pay the ultimate price: ourselves. Months and years pass as we cling to long-shot fourth and fifth opinions, experimental treatments and drug trials, putting our own lives on hold so that we can perpetually patrol the perimeter of our children’s lives. Meanwhile our marriages and closest relationships implode, careers bomb, finances crash, and self-care disappears altogether with our identity in tow.

I was already juggling all of the requisite responsibilities of your typical suburban Super Mom of two young teens when my job description got a lot more complicated. The roles of advocate, cheerleader, first responder, researcher, and others to come were foisted upon me by my son’s diagnosis with an uber rare disease, and the burden got so heavy that it broke me. I got my son what he needed, but I cracked open like the continental divide, leaving who I was in the Before irretrievably behind.

Fifteen million children suffer from rare, chronic, or incurable diseases in the United States. I’ve written Loving Large for their parents. Every mother and father of a child touched by such a disease might have a unique tale of the diagnostic and treatment odyssey, but the commonalities of our experience, our heartache, and our despair make this everyone’s story.