“Those Parents”

My husband and I have become “those parents.” The ones who email our doctors the night before clinic appointments with a list of questions we hope to discuss the following day, who send medical journal articles and drug-trial postings to our care team through MyChart (which we have downloaded onto every electronic device we own) to make sure we’re considering every treatment option available.

We’re the parents who want to administer every medication and change every dressing while our daughter is in the hospital, just to make sure everything about her care is handled to our rigorous (and sometimes irrational) standards.

We’re the parents who occasionally refuse treatment, seek out second opinions, and remind doctors of aspects of our daughter’s medical history we feel they haven’t adequately considered.

We travel with binders, labels, schedules, and supplies. We take notes. We overwhelm even ourselves.

What I’m trying to say, I guess, is that we’re super annoying.

Believe me, we know we’re a lot to handle. And while we’re always polite (I hope), routinely bring cookies and coffee, and try to communicate our unending gratitude and respect for the doctors and nurses caring for our daughter, we notice the glances at the clock, the eye rolls and sideways looks across the room, the pen clicking and audible sighing, and all of the other telltale signs that the medical professionals we rely on can’t wait to move on from our room to the next.

We’re “those parents,” the ones everyone whispers about in the hallway and takes the long way around the floor to avoid near the end of a shift.

This is a problem.

Our daughter happens to be the victim of a medical mistake that left her brain damaged (she was complex even before then, but suffice it to say the brain injury made things worse). I used to blame our obsessiveness with her care on the fact that we now know that everyone—even the smartest, kindest, most well-prepared doctor—occasionally makes mistakes or overlooks things or sometimes just isn’t paying attention.

We’ve been present and stopped the administration of accidentally mis-dosed medications. We’ve recommended based our own research nutritional and pharmaceutical treatments that, while initially poo-pooed by our doctors, have turned out to help our daughter significantly. We’ve recognized the onset of new symptoms before doctors have acknowledged a need for treatment.

We know we’re necessary. We also know we’re not doctors, though some doctors clearly think we’re encroaching on their territory.

As it turns out, this feeling of overwhelming responsibility isn’t unique to parents of children who’ve been harmed by medical errors. I’ve learned through the complex caretaking community that most of us who have children with significant medical needs, no matter the cause, have frequent enough encounters with the medical profession that we’ve experienced at least one close call or contentious conversation about what is best for our children.

We’re all trying to fulfill a role much more complicated than we’d planned for in a system fraught with risk and, yes, error. We’re afraid. And the stakes couldn’t be higher. So it’s no surprise that we all want to be involved and informed and to assert as much control over our children’s care as we can.

The problem, I guess, is that we may come off as overbearing know-it-alls, operating outside our wheelhouse when we offer our inexpert opinions, share our anecdotal (unscientific) experiences or observations, or (heaven forbid) second guess a doctor’s treatment plan or diagnosis.

But when our communication with doctors is strained or rushed or scoffed at or (worst of all) merely humored, I’m pretty sure it’s bad for everyone—especially our children. We cannot stop being our children’s advocates. They need us, and it’s our duty.

So, I’d like to come up with strategies to endear us to our children’s doctors and to facilitate a mutually respectful relationship that doesn’t require us to back down or just “take the doctor’s word for it.” I’d love to collect everyone’s best ideas here.

Lauren Schrero is the proud mother of Nora Levy, a 20-month-old bravely battling two rare diseases – Short Bowel Syndrome (missing half of her small and large intestine) and a rare form of intractable childhood epilepsy called West Syndrome. Nora is the inspiration behind The Nora Project, an elementary education curriculum about friendship, understanding and inclusion. Lauren is an avid reader and researcher and huge fan of Complex Child. She is honored to contribute to the special needs/medically complex community.