It’s a dance in which I know all the steps too well. I bump into an old friend or acquaintance and after a moment of polite chitchat the conversation takes a sharp left turn and the tone becomes serious. “How’s Savannah doing?” they’ll ask.
This is where I falter.
Savannah, my one and only child, was diagnosed with panhypopituitarism, a rare endocrine condition in which she makes no hormones, just weeks after her birth. In the 10 years since I have yet to meet a non-medical professional familiar with the condition, so there is always wide-eyed fascination. Questions range from the standard, “Do the doctors know what caused it?” to the inane: “But will she lead a normal life?”
Other than the medical alert bracelet on her right wrist there are no telltale signs that Savannah is panpit. With medicine she’ll replace all the hormones she doesn’t make. Still, because her body doesn’t produce the stress hormone cortisol, she’s at constant risk for an adrenal crisis, a potentially life-threatening situation that if not immediately treated can lead to shock, seizures or coma.
My temptation is to unload on these curiosity seekers with the gritty details of a recent emergency room visit for an adrenal crisis or my concerns about puberty, however, experience has taught me to tread lightly. People feign interest, but are never prepared to respond when you go head-to-head. Spill a wee bit too much and backs stiffen and the room goes cold. “But we have a great doctor!” I’ll say, back peddling.
Sometime to offset insensitive remarks of “at least it’s not cancer” or “God only gives you what you can handle,” I do a preemptive strike. “She’s fine, thank you,” I’ll say with a smile before steering the conversation to lighter territory.
Still, the real question that one needs to asks, and which would be more revealing of Savannah’s health is not “How’s your daughter?” but “How are you?” No one dare asks that.
Savannah is thriving today largely because this single mama tiger continues to fight for her medical care and educational services, and this simple three word question would reveal that. More so, it would allow me to stop whitewashing the truth and vent the years of pain and frustration I have bottled inside.
Like many caregivers I’m burned out. There are days after a heated battled with the insurance company or after spending hours in a doctor’s waiting room, I question if I have the mental and emotional stamina for the long haul. When I look both forward and back, I see the same: doctor’s appointments, specialists, tests, bills and more bills. There’s no endpoint.
I count the years until my daughter is an adult, gainfully employed and I can pass the baton to her. Then feel guilty. The management of her condition is a helluva burden and breaks my heart this is her fate, especially given this country’s health care situation. I also know that deep down I probably will never relinquish full control, so to the curious who wonder how one lives with no pituitary gland, I suggest they ask once — just once — how this tired mom is faring.