She Can Ride A Scooter: Another Reason To Be Grateful

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.

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 expenses 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 7 years ago this month 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

5 responses to “She Can Ride A Scooter: Another Reason To Be Grateful

  1. I am so very, very sorry. Life is so unjust and filled with so much pain. My husband and I (now married 18 years) were never able to have children. If it helps… eventually I learned to not compare my pain to anyone. Eventually, I just found gratitude, like you describe. Blessings to you on this journey. Embrace what you do have, in all its weakness, with all your might!

  2. I have lived with my daughter on death-row for 37 years. I envy you that you chose to not live the “boy in the Bubble” style. I never got past my daughters diagnoses.

  3. I had to read this a few times. I think I understand that Savannah came through okay? Or did I misunderstand? I hope you will write some time about how you and she recovered. Your last paragraph gives hope. PS: What does “panpit” son mean? Patricia

    • Thanks. Panpit is short for pan-hypopituitarism, an rare endocrine condition in which is is missing pituitary gland, which over seems all the body’s hormones. Thankfully, she is is fine and healthy now, but her condition requires lifelong management, and she is at constant risk of adrenal crashes

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