Oh, the poor single straw. Always to blame for breaking the camel’s back.
For me, the poor single straw appeared last week during our visit to Boston Children’s Hospital.
The poor straw was the realization that—unlike Albany Medical Center, which has a glass hallway connecting its parking garage to its medical building, and unlike Cincinnati Children’s Hospital, with its parking garage conveniently adjacent to the main building—a person who visits Boston Children’s must park her car in one building, go outside, wait at an intersection, cross a street, and then head up a mild incline to the hospital doors. And if it is below freezing, as it was on the day of our visit, and if you are pushing two small children in a double stroller, you must bundle them, brace them against this winter’s notorious “Arctic air,” and push on—out the garage doors, to the intersection, across the street, and up the small hill to the nation’s #1 children’s hospital.
How inconvenient, I thought.
What about medically fragile kids? I thought.
I was armed with medical records from another children’s hospital. The layout of this hospital in relation to its parking garage is, I thought to myself, not as good as the layout of Cincinnati Children’s.
This. This was the straw.
That I know the difference between this hospital and that.
That I can compare décor.
That I can admire the open designs and natural light of both Cincinnati Children’s and Dartmouth Medical Center.
That I can poo-poo the dingy aesthetics of Albany Medical Center. (Seriously, Albany? When was the last time you cleaned your carpets?)
That I can rattle off my opinions of these places like seasoned travelers might compare cruise lines or airports or fancy hotels. (Ah, the Four Seasons Maui. Excellent mattresses, sub-par pillows. Or whatever.)
This—this does not seem fair. I have been a mother for two years and nine months. This is how I’ve logged too many mothering hours: In hospital visits. In tests. In therapy appointments. In phone calls. In paperwork. In research. In doctor’s offices. In more therapy appointments. And in the quiet staring at the end of the day, eyes fixed on the white walls of our rented home, wondering What if What if What if.
…until I land on the worst two hypotheticals, the evil twins that stand hand-in-hand like the those creepy girls in “The Shining”: What if she dies before me What if she outlives me?
On this afternoon at Boston Children’s, my husband and I took Fiona and our nine-month-old to a leading scoliosis specialist (he was wonderful) and a developmental pediatrician (she was wonderful). If the parking garage broke the poor camel’s back, the Oral History of Fiona’s Medical Care, as dictated by me to the developmental pediatrician, bludgeoned the poor camel dead in the sand.
Hearing myself explain every appointment we’ve ever had, every specialist we’ve visited, every test she’s endured, every seizure I could recall, every therapist she sees, every major and minor health concern we monitor—it was unfathomable.
Sometimes—and this is not helpful in any way, but—sometimes I stop myself in the middle of my life, remember the pregnant not-yet-mother I was back in 2011,
…and wonder how she’d respond if she knew she’d be, say, coaxing her daughter through the third attempt at a catheter or washing the stinky electrode glue out of her daughter’s hair or sitting on the floor of her living room while her daughter’s physical therapist displays a catalogue of wheelchairs for her perusal.
Hearing myself offer the Oral History of Fiona’s Medical Care was like reliving, in brief, the heaviness of the past 2+ years. And by heaviness, I don’t mean, Gee, the weight of this dumbbell is heavy. I mean heavy as in monumental. As in planetary.
As in, did you know that the biggest black hole weighs 17 billion times more than the Sun?
I did not expect my mothering experience to be this heavy.
Because here’s the truth: while I regularly post images of Fiona like this:
…I just as often have to think about Fiona in ways like this:
Lately, my eyes are glossing over when a therapist or doctor gives me yet another thing to do with or for my daughter. The important leg-strengthening exercise. The food choice board. The visual schedule. The iPad communication apps. The placement of each bite above her molar. The multi-vitamin drops. The possible hip brace. The possible spine brace….
I am going numb at the thought of reading a 300-page textbook on IEP’s rather than a book from my personal stack: Brian Doyle’s Leaping. Jeff Sharlet’s Sweet Heaven When I Die. Jennifer Senior’s All Joy and No Fun: The Paradox of Modern Parenting.
Parenting my daughter is full of joy, indeed. But weeding through the demands of her care is often no fun. No fun at all.
And this is why, after the appointments, I found myself in the parking lot of a Boston burrito shop, crying to my sister on the other end of the phone. I bemoaned my intimate knowledge of various children’s hospitals. I tried and failed to articulate the weight of this life. I posited the idea that perhaps I needed some retail therapy. Seriously needed some retail therapy.
There’s a temporary happy ending to this tale. My sister, in her infinite wisdom, not only directed me toward Old Navy.com’s recent sale (thank you, Diva Pants in Goodnight Nora blue). She also alerted my mother to my distress, who then arrived for a week to help out.
Fiona was deee-lighted.
My husband and I went on a date.
For long periods of time during the week, I felt like a whole and complete person again. And did I mention Fiona was deee-lighted?
This is not an end. This is a temporary reprieve. My mother eventually left, and my husband and I have resumed the juggling act of our lives. (He’s currently at Dartmouth Children’s Hospital — X-rays, blood work.)
The calendar pages peel away, revealing next month’s appointments (ortho, neuro), revealing more and more and more therapy appointments. The to-do list lengthens. The advice piles beside the equally tall pile of questions. The sun rises in the morning, and falls in the evening, and somewhere in the universe, 17 billion times heavier than that sun, is the universe’s biggest black hole. There are heavier things, in other words, than this.