Sunday - May 03, 2009
Narrating Legacies - April 2009
Legacies. This month we measure legacies. (Please see the end of this journal entry for an invitation to help create a living legacy through the work of our non-profit foundation: Bright Happy Power).
In April, we consider the 'measure' of one child's life: Jessie. And the unfolding story of an older girl, growing into a young woman: Sarah. And our personal experiences.
And each of you...
Legacies. This month we measure legacies. (Please see the end of this journal entry for an invitation to help create a living legacy through the work of our non-profit foundation: Bright Happy Power).
In April, we consider the 'measure' of one child's life: Jessie. And the unfolding story of an older girl, growing into a young woman: Sarah. And our personal experiences.
And each of you.
YEARBOOK: Why now? Well, this month we're assembling the photos and words for a memorial yearbook page for Jessie. Her 5th grade class...yes, some of her peers are in 5th grade this year...is moving up to middle school. (Jessie would likely be in 4th grade this year, due to extended hospitalizations and absences from school for treatment for leukemia.) They're putting together a yearbook to remember their six years at Winthrop Elementary.
It's another transition for her friends, as they grow up, that we witness with pride. Those friends and classmates willingly made the childhood journey with Jessie, and included and supported her along the way. She was undoubtedly one of the gang, not isolated or set apart. She was accepted. She 'belonged.' She was theirs.
At the same time, watching her friends grow up is hard to do. It creates a contrast.
Going to 5th grade is one of many transitions that Jessie won't ever experience. Of course, we can imagine her excitement and attitude about graduating. Her visions for attending the bustling middle school/high school campus. We can picture her: Jessie, one small skinny kid bobbing and jostling along, gossiping with her head bent toward a friend, among an ocean of much taller and more developed teens. Going where her sister is already a high school student! We can imagine...
The silence tells its own story. We can fill in what we guess she'd say or do. But it's all just...filling in he blanks.
And that's our habit. We cannot just live with the silence. We fill in the gaps with what we know about Jessie...we extrapolate and imagine. We place her, in our minds, among her peers. We give her a voice. A stance. A story that continues.
But this page in the yearbook has an ending to it. A finality.
Yes, on every other page, she is carried along in the hearts and minds and choices of her peers, as they grow up, and remember her. They're taller. Older. Forming different relationships and becoming more confident (or confused) about who they are as individuals and as classmates. But she was 'theirs' and she is part of their stories now.
Jessie's pictures don't grow up. They stop at age 9. Her relationships don't evolve. She doesn't learn a new dance step or earn another karate belt, struggle over homework, or stop caring about grades because she's in love or heartsick over friendship challenges... She's young and vibrant and forever in third grade. Her life is contained in snapshots. And it just...stops.
BECOMING NARRATORS with our WORDS and ACTIONS: Instead, we go on. Our stories continue. We are the editors. We choose the photos and words that will summarize her life among schoolmates. We lay them out to bring her to life.
Then we turn the page and continue. Of course, we bring her with us. We fill in the missing pieces, and put her into the narrative.
So do her friends. Together we become her narrators.
For instance, this week her classmates are performing all sorts of community service actions and projects in honor of Bright Happy Power, the foundation inspired by Jessie's life. This week, they're knitting blankets, making and delivering cards and visiting with elderly citizens, or planting flowers and pumpkins around the schoolyard. Last autumn they planted flowers and created a flower garden at the school. Those blossoms are springing up in bountiful rushes of color. EarlyAct student leaders created a mural.
Her peers and friends and classmates remember. They allow Jessie's life to continue to have meaning and to change the world. They change the world with their hands, eyes, hearts and feet. They do what she cannot do anymore.
As her friends garden and work to heal and improve their landscape, as they plant seeds of hope and happiness, they change us, too. And her story continues, in each of them. Her legacy is shared in their busy, helping hands. And in their growing up.
We know what she has meant to us...although we're still discovering the depth of change she wrought in us, and how we shaped our lives around her, mostly by the edges and emptiness that are so easily touched in our day-to-day activities. But also in the way she filled us up.
But this isn't just Jessie's story. All of us survived.
IT'S SARAH'S STORY, TOO: Sarah is the living part of this sibling duet. Her story unfolds.
Cancer happened to Sarah, too. She's growing up, without her little sister and after years of trauma and loss, and finding her way. Trying to make all those years mean something...telling her part of the story. Turning what she needs and learns into ideas that can help other teens and siblings, too.
Sarah, who turned 15 this month, is coming to the end of her first year in high school, navigating the challenges and opportunities of adolescence. Loves. Friendships. Conflicts. Choices. Academic aspirations: High Honors. Creative extracurricular commitments: dance, choir and band. Athletics: biking, soccer and running. Work: serving as a teaching assistant at her dance studio. Volunteering and service: organizing and participating in fundraisers such as walks and bike rides and dances, and then having hands-on involvement in programs at Childrens Hospital Boston and up on the North Shore.
As Sarah finds her way, she influences the purpose of our family and our non-profit foundation: Bright Happy Power. It's mission is shaped, not just by Jessie's experience, but by Sarah's experience as the surviving sibling and teen.
Her legacy is open-ended. She can shape it by her choices. She is maturing into an adult. She has...as far as we know...time to do whatever she wants with her life.
Already she has influenced the world around her. She gave a scholarship to a young girl at the Ipswich Moving Company. She helps teach other young aspiring dancers. She's initiating and organizing programs that educate and empower young women who experience dating abuse. She dropped the puck at the middle school's hockey game to raise funds for Dana Farber's Jimmy Fund and she's training to ride in the Pan Mass Challenge with her dad and other parent-child members of the Bright Happy Power bike team. (And training for our own fundraising Coast-of-Hope ride on Saturday, June 20th.)
Sarah has lots of relationships, which are dynamic and in flux. Those friendships and family connections bump up against other lives, and touch them, and change them.
She's finding her way. Writing her story. Discovering and shaping her legacy as she goes.
And we're recognizing that Bright Happy Power's mission is tied to her growing-up, and the challenges and discoveries she makes. Because the story of Sarah, of siblings and survivors, is part of Bright Happy Power's purpose, too.
ADRIFT, FINDING PURPOSE: And of course, as adults, we're faced with crossroads. What does a primary caregiver do, for instance, with time and skills that have been committed to life-and-death decisions and pastimes for the past several years? How does a parent, mother or father, suddenly steer a course around the gaping holes and absences of life that was partially defined in relationship to one of two children, even though we have a living child who keeps us quite focused and busy?
How do we make time and space for all those other feelings that seem like boulders or icebergs...the stuff upon which we may wreck ourselves if we pay attention to them and get too close, but which might sink us anyway, if we ignore them?
What comes next? What do we do? In our personal lives? As professionals? As a family?
We're figuring it out as we go. Realizing we have to face certain losses and ask ourselves difficult questions. Make choices. Engage in new activities...exercise, creativity and self-expression, and income-earning work.
Some of our purpose comes from Bright Happy Power, or volunteering through church or Rotary. Some of it comes from parenting Sarah. Some of it comes from taking care of each other, or making time for our own individuals health and wellness needs again. Or nurturing relationships which have been dormant or stressed during the years of life with cancer: renewing family bonds and friendships.
YOUR LEGACY: Each of you has created a legacy, through the years of support you offered to us. You helped us survive this experience with grace, with humor, with hope.
You offered years of steadfast, hands-on nurturing: blood and platelet donations, marrow donor registrations, meals, child care, rides, visits, care packages, cards, prayers, calls, messages, gifts, yard work, house-cleaning, laundry, dog-care, individuals and teams running or walking or riding to raise research funds...the list is as long as the number of people who reached out to us.
Now we all heal together. And pay it forward, right? We learned from all of you. You touched our lives.
You also inspired each other. Many people witnessed a community in action...not just for a quick, short-term burst of support...but for a long-term "we're in this together" commitment.
INVITATION: We wish cancer was gone. Or life-threatening burns. Or other catastrophic diseases among our children. But they're not.
And so we are truly supporting other local North Shore families with Bright Happy Power: meals, care packages, books and activities, scholarships, peer groups, supplies and other necessities. We fund research, support children and siblings living with cancer or other life-threatening or catastrophic situations, and promote hope, happiness and empowerment among challenged children and families.
Children in Ipswich and neighboring communities-- as well as in Boston and New England, or in the international communities where we provide support-- feel the difference!
To learn more about some of the ways in which we create a living legacy for Sarah and Jessie, please visit: http://www.brighthappypower.org. You are invited to register online for the Coast-of-Hope bike ride in June, or to explore the programs and projects that we support. Perhaps we'll be part of your living legacy!
THE NEXT CHAPTER, THE NEXT STEPS: The page is turning. The story continues. We cannot sneak-a-peek at the ending, because no one knows what that will be...and really, does it end?
The journey changes, and our narratives are carried along, in bulbs planted and murals painted and bikes ridden and meals delivered and friendships honored and lives healed. It's told by children and adults.
It's a new part of our journey. A changing, dynamic legacy that is being narrated while we live it. It belongs to Jessie. And Sarah. And our family. And to all of you.