The doctor was void of any bedside manner. After three months of endless tests and procedures, she decided to inform me that my daughter has a rare medical condition, not in the preferable comforts of her scholarly office, but restaurant-break-up-style: in a dirty, crowded hallway, with scores of residents, nurses and lab technicians milling about.
“I want Savannah to spend another night in Pediatric Intensive Care for observation” she said dead-ending the conversation and walking away.
She took 10 minutes to explain for me what would be a lifetime. This was not the motherhood I envisioned when devouring parenting books and drinking fresh squeezed grapefruit juice.
The swift jolt of reality was comparable to being kicked in the head by a horse. Any attempt to re-gain my orientation and manage the situation was lost by the fact that Savannah’s condition was rare, so the patient pool tiny. It was something most doctors had only read about in a medical book. Few had actually treated firsthand.
I would hear repeatedly over the next 7 years: “There’s no clinical data available to explain that, mom.”
“We need to run another test, mom.”
“Just want to draw some blood, mom.”
And, then the all-time stomach punch: “We put in a call to the NIH, mom.”
Mom was an anxious mess. Still, I plowed forward like a bull, relentlessly questioning doctors and searching for another child like Savannah, who could put my fears to rest.
That never happened.
When I finally tracked down the parenting group, in my delusional, sleep deprived new mother state I thought I’d hear, “Oh, that!” soft chuckle. “Our panpit son just got a 4 year, all expense paid scholarship to Stanford and will be interning at Microsoft this summer!” Instead I heard precautionary tales from frustrated parents who’ve deemed their kids “Boy in the bubble” and lived on high alert.
That wasn’t my style.
I politely listened, but 12-Step meeting style, took what I needed and ignore the rest. This was not a club I wanted to join.
It was July 2005 that I witnessed my newborn have a seizure, her eyes flying manically back and forth, making her resembled Linda Blair in the Exorcist. Soon after I descended into medical hell.
Today, when she flies through the streets of NYC on her scooter or swings from the monkey bars, I forget the mad dashes to emergency and the nights I spent curled up on a bed in a hospital room waiting for a doctor to appear. Overwhelmed with the present, I rarely recall those times. But when I do, I am ever so grateful