Friday, March 25, 2011

What is True, Regardless

"I lihke your rehd cayne, NetNet," Abby says, ever-mindful of aesthetic.

We walk through the parking lot to the hospital doors, and Abby asks a dozen questions about the two helicopters landing on the helipads. She holds her auntie's hand, the one not holding the pretty red cane, and in typical Abby fashion, she motors in every possible manner but walking: hopping, skipping, weaving--in starts and stops. I say silent, smiling prayers that she doesn't tumble us all.

We navigate through the corridors of this beautiful, new facility, and Abby exclaims over the coffee stand and asks to push the elevator button and wonders aloud why the hospital is an airport when she passes the large, portrait windows looking out over the roof and parking lot. When we reach the neurology department, we sit on the bench, and she asks to play with the cane--an endeavor that proceeds successfully for approximately twenty-three seconds before she attempts raising it skyward like a baton and then grounds it against another patient's ankle.

While NetNet fills out her paperwork, I settle Abby at the table with her pink legos, hopeful this diversion will provide the focus her ever-busy body needs. She builds and settles, but her voice retains its signature boisterousness and signature volume--loud--half-narrating, half-singing her three-year-old stream of consciousness.

Her presence is a lesson in contrast. The air of the center is quiet, somber, serious--as most hospital waiting rooms are--but Abby flashes joy like a beacon from the pre-disease world. Her pink boots smack of care-free confidence, and she brushes her hair out of her face with girly, business-like efficiency. She is wholly unaware of the dozens of people around her facing new diagnoses or inexplicable loss of function or a future full of questions marks. I am aware of people watching her. Some smile, some just observe. Her auntie and I exchange amused glances and discuss whether having Abby in the exam room will be too much of a distraction. We decide we'll all go in together.

Abby plays quietly with her legos on the chair while the professional checks my sister's eyes, reflexes, strength, and balance. There has been new weakness, new numbness for the first time in two years. Little Missy worries the flashlight shining in NetNet's eyes will hurt her eyes, and my sister explains what the light does and that it doesn't hurt. I am struck by the fact that, regardless of context or ability, my sister is simply NetNet to Abby, always. NetNet's personhood, importance, role, does not change, even if her body does. Abby's perspective is the most real, the most true.

She finishes her lego creation: a tall, tall house with a swing on top. I tell Abby I would like a tall house with a swing. My sister says, "Don't you miss those days, when you get to create whatever you want?"

I am grateful for her lightness of being. I read the signs proclaiming that Colorado has been identified as a high risk zone for MS and that MS is the leading cause of disability among young women, and I wonder about Abby's future. She is more likely to get MS given her aunt's diagnosis, and we live in a latitudinal hot spot for disease anyway. It is possible that one day this beautiful, exuberant girl will receive the same news her beloved auntie did the day before her twenty-sixth birthday.

I hope fervently not, but if so, my prayer for her would be the same as it is for my sister. That she would know she is not defined by her ability or lack thereof. That she would know to her core what is most real, most true. She is loved profoundly. She is unchanged in my eyes. She is a vessel of light in a world of serious, somber waiting rooms.

No comments:

Post a Comment

I love comments!

Blog Widget by LinkWithin