The story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?
That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.
But there is another story in the periphery. We have another child.
I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday.
In a moment stolen between her after-school activities and bedtime — the former of which have been so intensive lately as to butt directly into the latter — she shared a poem with me. The assignment at school had been to write a “portrait poem.” She’d written a poem about her younger sister that began “Chest tubes and heart surgery, no. That’s not how I want to see my sunshine.” It went on to describe her sister in the ways we see her: bright, bouncing, beautiful, kind, laughing. It could easily have been written by me or my husband, but instead, Ronni, at thirteen, had made the conscious decision to see Sammi as more than the experiences that, for the rest of us at least some of the time, have defined her existence for many years.
When Sammi was born, Ronni was immediately and irrevocably in love. Despite our steadfast decision to keep the toys in Ronni’s world un-gendered, she had fallen for the baby doll her great-grandmother had given her on her first birthday. That doll became Ronni’s most precious possession, dragged behind her as she crawled, then toddled, then walked. That doll, named Shayna, came everywhere with her. She slept with Shayna crooked in her arms. Therefore, even though I knew that Ronni had fallen in love with her sister from the moment she’d first seen her, I was surprised, walking into my house with the carseat full of our tiny newborn, to find Ronni racing to us at the door, fresh from a bath, holding Shayna out in front of her.
“Baby Sammi! You want Shayna?” she asked, laying the doll next to her sister in the carseat.
She has been like that ever since. When Sammi went to the hospital for her first surgery and my parents stayed with her, Ronni sent a picture for Sammi to have in her room. When we gave up tomato sauce on pizza for Sammi’s GERD diet, Ronni never complained. When Sammi had her tonsils and adenoids out, Ronni made elaborate nests on the couch for Sammi to sit in and watch movies as she recovered. When we had a ridiculously complicated diet to follow, Ronni carefully hid her box of “not safe for Sammi” snacks where Sammi could not even see them and, without being asked, lied to Sammi about where she’d been when we sent her to friends’ houses for pizza.
She never fussed. She never told us it wasn’t fair that Sammi got so much attention, so many special foods, so much time alone with me. She got it, right away: Sammi needed help. She wanted Sammi to have that help.
And beyond that, she has loved her sister better than I did more times than I could count. She has been a beautiful combination of slightly-maternal and totally-fun, holding her hand crossing the street and inventing elaborate games for them ever since Sammi could interact at all. When Ronni made school friends and brought them home, it was understood that Sammi was included in the fun. Because Ronni made Sammi into her best friend — through infancy, toddler tantrums, illness and health — Sammi has been loved by Ronni’s other friends, too.
If there is a real heroine in this story, it is Ronni: the big sister in the periphery, holding space for deep, soul-felt love of the real person Sammi has always been.