I know what it is like to be the keeper of other people’s stories, to be the receptacle into which they deposit their memories. The storytellers are strangers, and it is my daughter who invites their words. Our exchanges are brief and later I will often want to go back and ask better questions like the following:
- “What is your fondest memory of them?”
- “How did he communicate with you?”
- “Where was her favorite place to be?”
Shared Stories Of Disability
Recently, on our family’s Spring Break trip, I was surprised to find myself curious, even thankful to hear about strangers’ experiences with disability. We are a family of six, with four children ranging in age from 14 down to six years old. Sandwiched in the middle is our daughter Luisa, who was born with Rett Syndrome, a rare neurological disease that primarily effects girls. Luisa was diagnosed at 20 months old, and in the years immediately following anecdotes from outsiders would not have been welcome. In my grief, I was merely trying to survive the next hour. I could not fully accept the gravity of my own daughter’s story, let alone the narratives of others.
I’m not sure why strangers felt compelled to approach my husband and me on our last family trip. Perhaps they were emboldened by our daughter’s physical challenges, now more evident than when she was smaller. She is in a wheelchair most of the day and suffers from intermittent bouts of breathing abnormalities and dystonia. Maybe the larger size of our family welcomes dialogue? Could it be that we no longer appear so frazzled and unapproachable as we did in the early diagnosis days? Dare I say, are we somewhat approachable now?
The Conversations
Whatever the incentive, the conversations began like with “I had a brother like her…” and were followed by details, like “he was older than me,” “she held her hands like your daughter,” and “I used to tell people we were twins because he was the same size as me.” One storyteller ended by telling me “he passed away a few years ago.” Another share that “she lived longer than expected–she was a teenager!”
Even as our hearts felt tender with those last sentiments, we received their stories with encouraging smiles. We thought of their words long after the encounters.
A Mother’s Reflection
That the strangers we met were siblings moves me and gives me pause to think on my three typically developing children. Someday will they approach a family out in the community? What playful anecdotes will they share of their sister? What tender details will they recall? Will they share how Luisa loves to be tickled in the space between her jawline and her shoulder? Will they share how she gets nervous and laughs when babies cry or how she held their hand across the seats of our silver van?
I imagine my son, perhaps bearded and tall, a man with his own family. Will he smile a bit, with a look of fond nostalgia as he recalls life with his sister? I picture Luisa’s younger sister, grown but still freckled-faced. Perhaps she’ll be an artist. Will her memories of her sister be of playing or of learning to perform acrobatics on her sister’s sensory swing? Will she recall setting up elaborate tea parties and feeding her sister bites of Cinnamon Toast Crunch from tin teacups? I do not have to work hard to imagine the oldest sister fully grown. She is maturing into womanhood beautifully even now. I wonder if her stories will be those of protection, advocating as she already does at church, in school, and with other children.
I pray over these children of mine– that they will have more joy than sorrow in their reflections, and more wisdom than resentment.
Shared Stories of Motherhood
Since our chance meeting with these two strangers, I’ve had time to reflect on what it means to be the receptacle of other people’s memories. It’s not a role assigned only to those in the disability world. Motherhood seems to invite the ramblings of women whose nests are now empty. “Enjoy them while you can, they grow up fast!” What these women are really saying is, “I miss those days. I miss my children.” People’s stories are often shared sideways. It takes sensitivity from the listener to invite the unfolding of a stranger’s lived experience.
Mothers, I wonder how we can grow more receptive to the stories of others? Are there tender questions we can ask? Perhaps when we encounter the next, “my, you’ve got your hands full,” we could see it less as an accusation, and more of a longing. Are we not more enriched by the stories of others? I know I am.
