Tag Archives: biography

Jul14

Not About Me, Not About You

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When you watch someone begin a journey that you have also enjoyed or endured, it can be either exhilarating or heartbreaking. It’s tempting … easy, really … to identify with what you’re witnessing. To believe you understand another person’s path … to predict what’s coming next, or assume you can imagine what they’re feeling and thinking. To personalize and color your perception of someone else’s experience with your own recollections and reactions.

That’s human. It’s what gives us empathy for each other. It often helps us connect.

Other times, it can get in the way of supporting someone in a journey that is completely new and specific to that person. As one wise mother reminded other parents of new college students yesterday at the Northeastern University orientation, “It may feel like it’s happening to you, but it’s not. It’s happening to them.”

  • I watched my daughter Sarah disappear among the crowd of other incoming college freshmen on Friday. Before she left, she handed off her new black NU Huskies sweatshirt and other extra “stuff” to us, stepping away with a lightened load. Freeing her hands, heart and mind to receive new resources and experiences during her two-day experience at Northeastern.

    We carried away the bulkiness of her one-too-many layers and some extra papers, bringing them home. To hold for her. She’ll be back to retrieve them.To clarify, Sarah’s participating in an international study experience for her first semester, so the orientation is a pre-departure workshop to cover travel and transitional logistics for families and students. Her overnight departure with other students brought a shared grin and head nod with my husband Chris.

    Yay! We want her to immerse herself in every step of this launch into her future. She’s taking flight, wing beat by wing beat, milestone by milestone. That’s the natural course of events. It’s new to us as parents, but we remember being new college students.

    We each recall our own paths of leaving home and entering undergraduate programs. Both of us had transformative experiences in college, and we believe Sarah will, too. I remember the long car ride to school, arguments with my siblings along the way, my mother’s reluctance to leave me, my eagerness to unpack and decorate my room and spend time with my new roommate. I remember phone calls home, with the wish list of things I’d forgotten and desperately needed on campus, in order to feel settled. I remember holding on and letting go. I remember.

    I think I can relate to my daughter. Imagine the emotions and thoughts going on inside her 18-year old skin. I think so. But it’s not my job to assume that I know what she feels or thinks.

    I remind myself what the speaker coached us to keep in mind. “It’s not happening to you. They’re the ones sleeping in a new bed for the first time, in a new country, at a new school, maybe speaking a new language.”

    It’s my role to give her space. To listen. To ask questions and be interested. But to let her tell us about what’s going on. What’s important. What’s meaningful.

    She’ll speak up if she has any anxieties. She’ll also share her enthusiasm. (The NU staff told us, over and over, that if a student has concerns, she’ll usually turn first to parents.)

    And as we were also reminded, it’s natural to be stressed and worried about change (both us, as parents, and Sarah as a student abroad). To find that things are different and uncomfortable. It’s how we grow as individuals. How we mature and prepare for life.

    She will be okay. She really will. Even if some parts of the journey ahead are tough.

    Much as we want to protect our children, we can’t absorb all of the difficult moments that await. She has to live through them herself. Learn and grow from them.

    So yes, I can empathize. I’m her mom. I’m connected to her. Maybe I can even predict some parts that will be hard for her to handle, and some parts that she’ll love the most.

    Yet it’s my daughter’s life. Her path. Her adventure. She’ll let me know how it’s all going.

    I will ask questions. Listen. And let her tell the story.

  • Reading the words of Jane, a mother of twins, whose little daughter was just diagnosed with leukemia, and is being treated at Children’s Floating Hospital in Boston? My throat aches. My fists clench.

    I remember diagnosis and transition into the hospital. Flashes so vivid, every sensory response rises to the surface all over again. Adrenaline. Quickened heartbeat. Numbness. Rush of feelings. Whirl of confusion. Unable to process everything at once. Requiring words and phrases to be repeated. Wanting immediate answers, and learning that much of treatment is about waiting and seeing, looking backward across weeks and months at patterns to find answers.This mother has heard the same speech. It’s like being inducted into a cult. Brain-washed, in a kind way, so you have a new framework for measuring the world and evaluating what’s good or bad. “She has the best kind of cancer. The best of the best. You’re lucky. She’s lucky.”

    Mind you, this woman — this new cancer mom — is a stranger to me. Connected as a friend of a friend, her experiences made accessible by her willingness to publicly blog and post Facebook entries about what’s going on.

    I also feel as if I know Jane, because of what we now share. The childhood cancer journey. But do I know her? No. Not really.

    We sent her family a care package of books and resources a few days after their diagnosis. Over a week ago. Oh, God. So early in the process, and so much yet to come.

    We provided them with the leading reference guide for childhood leukemia by Nancy Keene. Other books to read with your young child about mood swings and feelings and bodies. Some bed-safe activities for a little girl who doesn’t feel good. And a sister who needs love and attention, too.

    Again, I remind myself what the mother at the Northeastern University orientation said. “It’s not happening to you. It’s happening to them. It’s their experience.”

    Trust me, every other parent of a child diagnosed with cancer probably has words of wisdom for Jane. It’s like a pregnant woman hearing everyone else’s labor and delivery and new-mom stories. We all feel compelled to share and impart our wisdom. Unasked for.

    Yet some of us are also silenced … a little … by our own memories and anxieties. By what else we know about this journey, that no one ever wants to hear or learn. Knowing what I know about the cancer journey? Imagining where my family has gone?

    Some of my feedback wouldn’t help a mother and child, a father and daughter, just starting out on the cancer journey. They need hope. Support.

    So we edit ourselves. Provide words of encouragement. Keep quiet about the other stuff.

    Jane will become the expert in advocacy for her newly-diagnosed child and for her well child, too. They will have their own scary times and detours, their own dark places and ah-hah moments. Years of treatment ahead. Their own journey.

    My role, as a stranger, is self-appointed. They didn’t ask for my help, and they probably don’t need it.

    Yet I choose to do this, for Jane and her family, as a mom who has walked a similar, but different, path. To cheer. To believe … along with them … in the best possible outcome for their little girl. Occasionally to give Jane and her family some positive reflections and energy, or send some more useful resources.

    It’s not about me. This is their journey. They will write their own story.

Yes, I’m filled with emotions in response to what I’m privileged to share. To vigil, from afar, with a family living with cancer. To watch the unfurled wings and unfolding steps of my grown, surviving daughter’s transition to college abroad.

I have gut reactions. Twisted stomach. Fluttering pulse. Closed throat. Furrowed brow. Wide smile. Clenched fists. Open palms.

I also have a compulsion to fill silence with sound. To talk. To share. To comment. Give advice. Narrate.

My other first reaction is to act. To offer help, whether it’s been requested or not. To rescue, in some small way. To ease the hard parts for someone else. Yet that’s not my role. Nor is it something I’m able to do in these scenarios.

Instead, the lesson for me is to be quiet. To listen. To watch. To ask a few specific questions, and maybe offer specific forms of support, when those are identified and within my capability.

We are connected by the human ability to have empathy for what someone else is experiencing. In both cases, though, it’s not about me. It’s not about what I already know, what I would say or do. Instead, it’s happening to Jane. To her family. To my daughter Sarah.

As many of you once did for our family, I now bear witness to the paths that other people walk. Their stories are just beginning.

Jul1

Choose Your Ground

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For many reasons, my friend Rebecca Gibbs is on my mind today. In part, because her daughter Anna wrote a beautiful poem about our family, which I hope to share in the future, with her permission. Perhaps because her husband has been working in our neighborhood, overseeing a town project. Also since I have a stack of books borrowed from Rebecca’s library — stories we had discussed — and some that I just finished reading, so that it felt as if our conversation has continued over the past several months. And maybe because her mother is a good friend who also attended graduate school, and is encouraging me on this adventure. And as I plan for classes in the fall, I’m encouraged because Rebecca attended Harvard University; that was one of the stories I was privileged to capture on videotape one sunny afternoon, as she made recordings for her family, about a year before she died.

Of course, she’s in my heart, because she and Jessie shared the journey through cancer, and trips down to Dana Farber. Rebecca G. and I understood each other in a unique way … she was a mother who faced the knowledge that she would leave her children before she was prepared to do so, and I was a mother who had lost one of my children much too early.

Her presence in my thoughts was a sharp contrast with the scripture I heard in the Meetinghouse today. The story tells of two miraculous healings.

In the Biblical text from my faith tradition (Mark 5:21-41), Christ was asked by a father named Jairus to come heal his dying 12-year-old daughter. Crowds followed him. On the way, a woman, who had been isolated and gravely ill, worked her way through the crowds and touched his robe. Christ felt energy go out of him, and knew someone had been healed. After he spoke with the woman, and listened to her story, friends of Jairus rushed up to say that Jairus’ daughter had died. Yet Christ promised that the child was merely sleeping, not dead. He continued to Jairus’ house and … “42 He took the twelve-year-old girl by the hand and said, “Talitha, koum!”[d] which means, “Little girl, get up!” The girl got right up and started walking around.”

Admittedly, I felt angry when I heard that scripture. Bothered. Maybe just momentarily, but honestly, it’s always there, at some level. Where was that promise, where were those words, in my family’s journey through cancer? Or Rebecca Gibbs’ journey? Why are some healed in their bodies, and not others?

Wasn’t there a “Talitha, koum!”for our child, too? And others young daughters and sons? Or adults, because we are all someone’s children?

I don’t often allow these thoughts to have much room to wander around and be expressed. They’re futile. They’re raw. They aren’t tempered by everything else I know and believe. They grow out of the fundamental outrage and sorrow that is always, even a little bit, part of our consideration of Jessie’s life and death. I wouldn’t be honest, with myself, or anyone else, or my Creator, if I didn’t say so.

I wish, and I know others have wished also, that “Talitha, koum!”had been our promise. Our story. That we could be witnesses to bodily healing through faith.

And yet as one wise woman of faith, Sister Leonore, has reminded us more than once, Your prayers may be answered, but not always in the way you expect. Perhaps “Talitha, koum!” is different for some of us.

The Meetinghouse, restored over the past several years by members of First Church’s congregation. Now in use again, decades after a fire caused its closing.

Certainly that was the challenge that Rev. Rebecca Pugh faced today, as she grappled with that scripture with us. We met today in the small Meetinghouse, a freestanding structure near our larger church, which has undergone its own journey of healing, because it was badly burned decades ago. It has slowly returned to usefulness through years of thoughtful restoration at the hands of many congregation members, so that it is available again to be used for summer worship.

In that freshly-healed room, small enough for a modest summer congregation to gather, Rebecca Pugh looked at the closely-clustered group of friends and members as she talked about the scripture, and those miraculous healings of Christ. She was careful with this topic, because she recognized that it was sensitive.

You see, I’m not alone, wondering why such healing miracles didn’t happen for each of us? I sat in a room filled with people who understand, quite intimately, what it means to live with broken bodies or lives.

Linda listened from her wheelchair; she was paralyzed ten years ago in the same automotive accident that took her husband’s life, and changed hers forever. Nearby sat a young visitor who is deaf. Others in that gathering attend regularly, and serve in leadership roles, yet live with chronic conditions that range from cancer to immunosuppressive conditions. Scattered among us sit those who have overcome eating disorders or reclaimed sobriety, yet will always struggle with these challenges. Of course, some among us are otherwise psychologically or emotionally wounded, too.

Don’t all of us wish we’d felt the rush of restorative power upon touching a Healer’s robe, or heard “Talitha, koum!”as a child rose up from the brink of death? Instead, many of us live inside slightly imperfect or very compromised bodies, or function despite deep connection to other losses and traumas.

We try to find comfort in what Rev. Rebecca Pugh identified as spiritual healing. Because we don’t all receive miracles, do we? At least not in a form we immediately recognize. Although maybe, when we reframe the story, and look at it differently, there’s a miracle anyway.

As Rebecca Pugh pointed out, our experiences are sometimes like the scriptural account of the woman who pushed through the crowds to touch Christ’s robe. We may rely on the courage of connection to this community and our Creator, and the resources that those give to us, seeking whatever hope could be gained there.

As you look around, you don’t have to read the Bible to see such examples. Sitting in that old-new Meetinghouse, its fire-ravaged scars still part of our history, its structure shored up and reclaimed to be purposeful again, we could see the same lessons visible in each others’ lives. Around us are living mentors, teachers, and inspirations. We are privileged to know people who wake up each day, inside bodies that don’t do what they were designed to do, and yet find a way to reach past those limitations to be part of something bigger, something more, and find meaning in lives that are blessed in other ways, if not by physical fitness and health.

Yes, I wish we’d received healing miracles. But we didn’t. Not that obvious kind, anyway.

Like the people in my congregation, Rebecca Gibbs was more than my friend. She was also, I realize, my guide and teacher.

She thought past her own cancer, which was progressing, transforming and diminishing the length of her life. She considered how to heal her family, too, even after she was gone.

One way that she tackled the transition from her presence in her family’s life, to her eventual departure, was to invite her family up to the Highland-Cowles cemetery. As I remember this story, which she told to me, though I recall it imperfectly and secondhandedly, she had an outing with her spouse and two children. Up under the same row of maples where Jessie’s ashes are now interred, she spent time with them, admiring the view, the trees, the setting, talking about why she liked that spot.

She created a living link to that spot, where her remains were later buried. In that way, her family had her own words, her own feelings, and her living presence imprinted there, as part of their connection to the site they had selected. She hoped they would go up there, and when they visited later, be comforted by that first visit with her.

Rebecca Gibbs chose her own ground: soft green blades of grass and occasional upheavals of knotted tree roots, sheltered by an arching canopy of verdant whispering leaves and a chorus of singing birds. She stood there, above her own eventual passage, and claimed it. Made it part of her living narrative, to give as a gift to her husband and children.

Rebecca G. and I also found it comforting that Jessie and she would be close to each other. Near each other, between the stately the row of maples, overlooking the town. Rebecca believed they’d be near each other, both here on earth, and wherever they next sojourned.

Part of me will always ache at the words in the scriptural account that cried, “Talitha, koum!”Because the way my younger daughter “got up” was to leave this life, and move on to another place where I cannot yet follow.

And yet, I also know, and assure you, that there are many more layers to our response to Jessie’s life and passage. I believe that part of the answer to our cry for healing, our prayer, was the way that she and my friend Rebecca G. each lived beyond the limits of cancer, and made us pay attention, and realize that we can make a difference regardless of how short or long we live, how small or large our ways of reaching out to others.

And the same is true of those people I witnessed in the little white Meetinghouse today, listening to the anecdote of miraculous physical recovery, when some of us won’t ever have that experience in this lifetime. All around me, people continue to live boldly and brightly, or quietly but visibly.

Whether each of us intends it or not, we become mentors for each other. Examples about how to make purpose out of unfathomable circumstances, how to find grace and hope when all seems impossible, how to keep going when it seems there are too many obstacles, how to hold on or let go, how to be part of this community, this experience, this life together.

I also realize that the promise of healing – physical or spiritual — doesn’t mean you won’t hurt anymore. Or carry scars. Or continue to struggle with old habits and relapses and cravings. Or have times when you fall into dark places, and come out again.

The promise of healing is there in the faces gathered to listen to the stories in Mark. It’s visible in the lesson of people who show up and claim their chance at healing and connection. It’s about trying. Continuing. Being present. As much as possible. In whatever way is meaningful and practical.

Each of us, in our different ways, claims our ground. Creates living stories that will later become memories, and heals self and others – at least emotionally and spiritually, if not bodily, as much as possible – here and now. Again and again. Maybe on velvety green spot beneath towering maples. Or inside the reclaimed walls of the Meetinghouse. Or somewhere else along the way, on our different journeys.

Jun27

Vision Board

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Among the many treasures that awaited discovery as I emptied three rooms over the past two days? Images drawn by both of the girls. Their words. Photos and awards. Discarded homework. Storybooks.

As for Chris and I? Our wedding album. More photos of us as a young couple. Mementos from birthdays in a different house in a different decade. Textbooks and roadmaps. ID cards from our roles as guardians in the hospital, paperwork from different jobs (for me anyway), plastic membership cards for shops and services that are defunct, certifications from Rotary over the past few years, and so many other odds and ends.

Quite revealing was the personal Vision Board that I found. I made it. It was created during a workshop led by Lauren DiBiase a few years ago.

You know what a Vision Board is, yes? It’s a poster board or sheet of paper on which you paste images of what you hope and desire for yourself. It can be created with pictures of objects that represent the lifestyle you hope to live (houses, boats, cars, stacks of money), or it could be self-images (activities like cycling or kayaking, silhouettes, healthy food, closeups of body parts, fitness gear) or spiritual symbols (ocean, forest, stones, desert, sky, fire), or educational representations (language, books, tools) or image of destinations (maps, special landmarks, transportation like ships or planes) and whatever else  you wish to set as goals for yourself.

Then, presumably, you hang it up somewhere useful, as a reminder of your target – your vision – for your own life. It’s an incentive. An in-your-face prompt to aim for what you desire.

As my husband Chris says to our daughter Sarah, “Every decision brings you further or closer to where you want to be.”

The funny thing about my Vision Board? It’s full of words, not pictures.

Not surprising, in many ways. Yes, I’m a visual person. I paint and sketch. Essentially, I’m also a word person. I read and write insatiably.

During Lauren’s workshop a few years ago, once I starting finding phrases and words that spoke to me, clipped from magazines, I glued together a very large composition: a wish list and extensive imagined biography on the board. It took shape as language, instead of a pictorial snapshot. Yet it embodied what I aimed to achieve in my future.

Happily, her workshop isn’t about judging or editing. There aren’t any rules, except to fill the page if possible. To learn about yourself, through the process of seeing what images (or words, as in my case) call to you, and wind up on your Vision Board. No one advised me to limit myself to pictures and leave off the words. Or to re-do my composition.

Ironically, until this week, I had that Vision Board safely tucked away in an envelope. For years. It wasn’t hanging up where it would be visible all the time. Huh.

When I put it aside, hidden from view, was I ignoring my own wishes? Or was the exercise of naming and acknowledging my own wishes sufficient? Can I believe that I have acted on them ever since, regardless of whether I had the Vision Board to inspire me? Perhaps.

Well, the answer probably depends on what I see now on the board, and compare it to where I am in my life. How much of what I pasted on that board is now present in my life?

Lots. Some of those expectations for myself come and go. For instance, I’ve resumed the daily morning yoga routine with my teacher Ingrid, so I’m feeling good about self-care (two days after starting the sessions, I’m virtuous, don’t you think?). Attending graduate school wasn’t on this board, and yet it fulfills many parts of what I pasted there. Relationships? I am deeply connected to my family and friends, and we are always a work in progress, don’t you think?

Maybe I’ve let go of other desires. Or come to a more balanced place in connection with them.

The Vision Board is a touchstone. It’s a snapshot, a way to measure where I was, and the distance I have traveled.

It’s okay if some of the things on that board aren’t what I’d wish for now. And it’s great that there are things I’d paste onto a Vision Board now, that I didn’t imagine for myself a few years ago.

The other items I found as I cleared the rooms … an unfinished story by Jessie, a game board invented by Sarah, a textbook from Chris’s college days, a thesaurus I received for my own high school graduation,  a rubbing of our family’s handprints and our dog’s footprints cast into concrete in our former driveway … are also touchstones. We all have them.

Our lives are mostly moments lived in transition, between stepping stone and stepping stone, as we respond to one experience, shift balance and then move toward the next. The Vision Board, and all of those other artifacts I discovered in the past few days? Each one is like a stepping stone where we once paused. Either I, or some other member of my family left a footprint behind – an impression with toes pointed in the direction where each of us expected to go – heel already lifted and the ball of the foot dug deep as we each leapt toward the next point.

Now I’m landing on the next stone, and the next, leaving more tracks along the way.

Jun2

Every Day — Big or Small — Is Part of the Story

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After the promenade and the accolades, after the scholarships and diplomas, after the summer of hot fun and hard work, and the semesters of study that lead to a college degree and first jobs and independent living and grownup friends and a life beyond the North Shore and a career and great loves and family and all the parts of life that come after graduation from high school … what remains to mark our childrens’ lives? Or our own?

In the end, after all of this pomp and circumstance, all this effort and sweat to get to these big moments in life, what comes next?

Finally, are we each just a name in a stone? I don’t think so.

Yes, I have a place to go — a headstone at the top of the rambling cemetery steps — to run my fingertips around the straight lines and deep curves of Jessie’s name carved in granite. In it are etched the minimal facts of her life.

Yet that’s not where I carry my youngest daughter.

And as Sarah graduates and moves on to the next adventures in her life, I might rub my thumb over the pink silk ribbon of her ballet slippers, but I don’t think that single soft strand contains her whole life . She’s adding more threads to her tale, even as I pause and think of her.

It’s easy to think that tangible artifacts — photos, medals, jewelry — contain us.

Yet we might worry that we are each, in the end, more ephemeral. Merely a collection of fleeting sensory messages. Imperfect memories impressed into other people’s minds. A flood of feelings invoked when someone who loves and knows us smells the first curl of roasted, just-brewed coffee or the strawberry tang of a certain shampoo. An off-key voice singing You Are My Sunshine cheerfully in audio files. A blurry face and hand in a bright-striped jersey waving from the far side of the green soccer field, caught in a loop beyond time, in video clips. Handwritten notes, or child’s sketches.  A series of framed certificates on the wall or shoes empty, worn at toe and heel, on the floor in the closet.

Don’t you believe we are so much more? We are each the energy moving from the moment of birth to the last breath, and beyond.

Yet while we might know the beginning date for this human life, we cannot know its end date. It might be years from now. Or merely hours.  And so,  we are the accumulation of moments – common and exceptional – that comprise whatever time we’re given.

What story will your biography tell? It’s a weekend to think about what we have already done, and all the possibilities that unfold before us … and the gift of today itself.

As part of this posting, I’m borrowing from reflections first written in May 2010 (dok.com). Now that graduation is upon us, “ …We fill our names in the blanks, brush off our resumes, polish up our personal stories and professional accomplishments, and reflect on our lives.”

“… there is so much more to every person’s story. We find different ways to make a difference, whether it’s simply showing up and doing a good job, offering a smile with an extended hand, or volunteering to help in some way. Not everything can be narrated by a GPA, an academic degree, a sales record, a certification, a resume, an audition, an essay or an application. Paper doesn’t ever tell the whole story. Not even a great multi-media campaign can tell it all.”

“… We are each so much more than a name on a stone or the answers filling in the blanks on a piece of paper. We each take up time and space. We touch many other lives. We are bound by knots and webs into a connection of lives and community, into a spectrum of time. And even when we pass beyond mortal senses, we continue to change the world. “

“… Our lives are more than a footprint on the beach or a signature on a page or a name on a certificate or a shadow in the late morning or ashes on the wind or dates on a stone. More. Our biographies aren’t static. We change…all the time.”

Today is its own gift, and one part of our tales.  Sunday, during high school commencement, will be a highlight for many of us. And a difficult day for others.

Then will come the next day, and the day after, and the one after that … and though they may not seem as climactic as graduation … each day, each moment is worthy of energy, focus and attention. Each day is a gift … each is part of our biographies.

We’re not so much a summary of the big moments, as a combined total of all the small ones that brought us to wherever we are, right now. And where we find ourselves every day that follows.

May25

Princesses

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Okay. I’m going to make an argument for princesses. And yes, it will be emotional.

Recently, we remembered a story about our daughter wanting to marry her daddy when she was very little, then crying when he explained that wasn’t possible. For a brief period of time, if a male role model is present, a father — biological or adoptive or foster or simply stand-in — is the only measure that daughters may have about the men in their lives. How dad sees her, how he treats her and communicates with her, as well as how he interacts with the other members of the family… these experiences become, to some extent, the standards by which other male relationships are assessed.

And when daddy treats his daughter like a princess? An intelligent, capable princess for whom he imagines all the most amazing accomplishments, such as travel, college, achievements and so many other treasures?

Can you really argue that’s wrong? No, I don’t think you can say that it’s wrong for a father to want great things for his daughter, as long as he’s also realistic about who she is, what she wants. As long as he listens to her, and adjusts his expectations to support her own inner sense of self, her own dreams and aspirations, and enables her reach toward those goals.

Lest you still think it’s wrong to want to be a princess?

We had one daughter who had a crush on a boy in her grade. For two years, she was very interested in him. Meanwhile she dressed up for dinner dates and dances with her daddy, and he was the measure of her esteem for men in the world. They danced through Disney together, she in her flowing dresses, arms flung wide, twirling at the edge of human circumference, certain he would anchor the pivot point, balanced to hold her steady and let her reach as far as she could go, yet remain safe.

Jessie believed she was loved. Valued. The most important person in his universe, when they had their dates.

Yes, she was in love with a little boy, though she never knew more than her Valentine’s affection for him, writing his name on a card and hovering over it. A second grader. A little girl’s puppy love.

Her only real experience with being the object of another’s great masculine love was feeling like a princess on her father’s arm. And I am grateful, every day of my life, that she had that gift from him.

Chris has always aimed this focus on his daughters. Tonight it was directed at Sarah on prom night.

His lens followed her. He watched her with her date. With her friends. Her classmates. Her family. Her mentor. He reveled in Sarah’s confidence and joy.

At the end of the night, the camera was put away. We returned home, and Sarah went off to her night of dinner, dancing, celebrating, socializing. Finals and classes are over. Commencement is one week away. High school is almost a memory, and tonight was the culmination of 12 years of hard work. And the start of new dreams …

Tonight, Sarah was a princess. One of dozens, but the only one from inside our family and our frame of reference.

There are so few opportunities in our lives, except when we don costumes and roles, to be the focus of all eyes, the royalty at the center of the event.

Sure, there’s plenty of truth to social arguments about body image, and cultural value statements, and so many other perceptions about gender and power and other issues. Reasons why proms are not always a positive experience.

But I’m here to remind you, that I’m grateful for every day that my younger child felt like a princess. She had so few years to bask in that love. And she will never promenade or walk down a wedding aisle or across the graduation  stage for a diploma.

And my 18-year-old has grappled for these moments of equilibrium and self-confidence and celebration and feeling inwardly beautiful, as well as externally stunning. She has had her own set of challenges, and she has earned tonight’s liberty. And the status of princess.

Yes, there are plenty of reasons to intellectually protest promenades and ball gowns and tuxedos. I respect those reasons and arguments.

But I will say again, you haven’t lived my family’s life, or walked in my shoes. And gained my perspective about the value of being a princess.

My reasons for wanting to give a daughter the feeling of being a princess? Largely emotional, though rooted in plenty of anecdotes and years of working therapeutically with two vastly different daughters, with different issues and realities and problems and strengths.

Today, I am grateful for chances to give our children this dream.

As I mentioned, I have walked the streets of Disney fantasy, and seen my youngest child dance through them with her father. She needed to escape, and believe in ideas and fantasies bigger than herself. Routinely, she also had to consider her imminent mortality, and have conversations with counselors and pastors about life after death. As it turned out, I sat on the other side of double doors while the my youngest daughter’s lungs bled out and they surgically opened her chest to try to restore her heartbeat and oxygen exchange.She died without our companionship, while I begged to be with her as she passed away, but was kept one room, several feet and a whole lifetime apart from her, forever.

My comfort? That she danced. That she believed she was a princess. That she dared to love. And was sure she was already loved.

I have seen my eldest child on the rolling lawns of Castle Hill among her peers, in a long glittering gown on the arm of her affectionate date.We snapped photos overlooking Plum Island Sound, before she claimed a fleeting night of poise and pure exultation in the midst of ending high school and starting college and a nursing program.

Getting to that moment, to that height? It has cost Sarah dearly. She has earned it. Striven for it. Wrestled with her own challenges and demons; defied great odds to be here, among us, intact and accomplished.

I have seen what a day of feeling like a princess can give to a child who is dying. Or to a young woman just starting to live.

Just fleeting moments. Fragile bubbles. Dreams. Fantasies.

But also assurances. Standards of measure. Sources of confidence and self-eseteem. Fulfilment of a wish. Assuredness that she is worth being loved. And certainty that she is loved already. And that she can take her own risks, and love others, too. For however long she is given on earth to do so.

May24

Worth Telling

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What stories would you tell at the end of your life? What would be the moments that you hold closest, and narrate for others as the illustrations of your happiest, darkest, most embarrassing, most memorable, silliest, most meaningful experiences?

I’ve been thinking again about the song that Sarah sang for her sister Jessie on Monday afternoon.

“And the stories that we tell
will make you smile
Oh it really lifts my heart … ”

I haven’t decided what anecdotes I’d want to share at the end of my life. Maybe family camping trips, traveling for hours in the back of the car, telling stories to my own brothers and sister. Staying up all night to work on an architectural project in the studio at Miami University while my roommate read our assigned books to me. Or dancing in a tuxedo at the black-and-white Beaux Arts ball in Cincinnati with Chris, soon after we first met. Graduating from U-Mass Boston. Signing the papers to buy our first house on Central Street in Ipswich. Feeling Sarah roll through my body before she was born, knowing where her elbow and foot were pushed against the inner wall of the uterus, while it seemed as if I’d known her all my life, though she wasn’t born yet. Driving past the Charles River on the way to Childrens Hospital, hours after a blood test at the pediatricians’ office suggested that Jessie had leukemia. Watching Jessie come downstairs in her black biker boots, sequined dress and gloves for a date with her daddy. Flying in a plane to release Jessie’s ashes. Listening to Sarah sing Hallelujah at in the sanctuary at First Church. Successfully running the Coast of Hope bike ride. Watching Chris and Sarah cross the finish line of the Pan Mass Challenge together. Being accepted into graduate school.

There are plenty of stories. Including those which haven’t unfolded yet.

Some tales I’d tell my children. Ones I’d share with my sister and brothers. Maybe a few just for girlfriends. Others I’d swap with Chris.

And maybe some I’d tell to whomever I meet in the next place I’m going, when the journey in this mortal place is over. To other souls. To angels. To a divine being.

What will seem important at that point? What will be funny? What will be profound? Worth holding onto, by claiming it with words? Worth letting go, by giving it away as a story?

 

 

May2

Family Portrait

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How about family portraits? C’mon, we’ve all been in some doozies. Whether they’re posed or candid, don’t you have some that just capture the spirit of the family, and others that will never make sense?

THIS YEAR

Our family had a portrait taken on Sunday. Terri Unger tried to wake us up during the session. “C’mon, guys, I need some energy. Do I have to make you stand up? Sarah, you’re okay. I need something more from the older generation.” That would be Chris (my husband) and I.

Hmmm. We were just tired, I guess. It seems like that happens a lot lately, when we’re in each other’s company. Minimal energy. Low mental and emotional presence. (But that’s another subject entirely.)

Family portrait this week

 

It’s been five years since we had a family portrait taken. The last one was also snapped by Terri.

FIVE YEARS AGO

And talk about stress five years ago? Terri came to our house, armed with every roll of black and white film in her house. On one day’s notice.

We met Terri in our backyard. We’d just arrived home from Jessie’s karate belt ceremony, when she earned her orange belt. We were jamming the family photo into a weekend already bristling with “to do” items, also trying to fit in other tastes of freedom and “normal” family life into a few fleeting  days, before Jessie was re-admitted back into the hospital.

We’d just learned, one day earlier during a routine visit and its resulting blood test, that our youngest child had relapsed with leukemia for the second time. That Saturday morning, we didn’t even know what treatment options awaited her, or what outcomes we might expect. It was guaranteed to include extended and intensive stays in the hospital again.

Sarah and Jessie 5 years ago

That morning, Jessie was on an adrenalin rush. And cranky. Sarah was restless, but willing to cooperate, if we could just get it done. It was cold outside, and time was limited, so we wore whatever layers we already had on, and tried to make the best of it. Jeans. Khakis. Karate ghi. Vests. Sweaters. Frowns.

We improvised in our own backyard. No one could relax, and no setting or pose seemed natural. We sat on the swings. Climbed into the treehouse of the swingset. Sat together on a bench in front of the swaybacked clapboard shed. Stood beneath the towering maple wrapped in ivy. Sarah and Jessie crouched together by the ivy-clad fence.

Nothing quite worked. Jessie made faces through the whole thing, angry, hungry, cold and tired. Ready to be done with it all and easily worn out. (Ask Terri, she has many stories about the most moving or spontaneous portraits captured mid-meltdown with children.) Finally we included the family’s elderly black lab Lacey. That was probably the best decision we made all morning. Jessie hugged the dog and glared at us, but grinned a few times, when she felt naughty and defiant. Those moments shine through in the portrait.

Out of that morning’s photo session, despite all of its stress and worry, its emotional tug of war, came beautiful images. Truth.

Family Portrait from 5 Years Ago

Later we put up Terri’s images of our family in transplant and ICU, on Jessie’s door, to remind medical teams who came to consult that their bald, bloated cancer patient swarming with tubes and extra infections, was also a vivacious little girl with a family, a dog, full head of hair, a karate belt, and lots of attitude.

We trusted Terri with a “bubble in time” that couldn’t ever be reclaimed, rescheduled or recaptured: our family in its last few moments of life together. Facing dire news. She was gracious and helped us through the session, and gave us back irreplaceable images and memories.

RIGHT NOW

This past weekend, we took a quieter portrait. Heads tilted together. Slightly more prepared. Nicer clothes. Less attitude. More grown up. Trying to muster some energy for the camera. Maybe overwhelmed by all the transitions we’re now experiencing as a family: graduation, college, and so many other steps. Against a black backdrop, but lit by the bright sun of April and moved by its wind.

The funds for these portraits, of course, will help Terri’s brother Dan pay for his own cancer treatment. Learn more on her Facebook account.

And what stories will the images tell us, when we see them? What will we know about the people smiling (or not) back at us out the photo. What you can see in it, and what’s not visible? The story inside our portrait, in many ways, is unfolding. We don’t yet know its plot line or its outcome.

But sitting still together – all three of us in one place – that’s its own milestone. A fleeting moment between comings and goings, and major transitions and migrations.

OTHER FAMILY PORTRAITS – HUMOR

Meanwhile, I found this humorous site online. It’s called awkward family photos. View and wince and laugh.

Apr16

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Today is a blisteringly hot day for the Boston Marathon. Race organizers offered “deferment” to athletes who might suffer by competing in the extreme heat. Yet the race goes on.

William and Jessie cross the finish line together in 2004.

The Boston Marathon has been a landmark in our lives since we first moved to Boston almost three decades ago. Initially we just watched from the sidelines, because it was an exciting sports event that ended in our newly-adopted city. Later we cheered for out-of-state friends running in it.

At the start of the 21st century (it still feels weird to say that) our connection to the famous Boston race became quite personal. When our younger child Jessie was diagnosed with leukemia in 2001, she was quickly chosen as a pediatric patient partner for an athlete who had signed up to race for a “cause.” He wanted to help the local pediatric hospital – Childrens Hospital Boston – by raising funds while he raced, because he’d spent so much time in hospitals as a child himself.

His name, of course, is William Tan and he’s been part of our lives ever since. Originally paralyzed by polio as a toddler, he has striven to overcome his challenges through athletic prowess and intellectual pursuits. William was a researcher at the Mayo Clinic who went on to earn degrees from Oxford and Harvard Universities and then become a practicing M.D. He has participated in marathons on every continent on the globe, setting records for speed and distance as a wheelchair competitor along the way, and using his accomplishments to inspire major fundraising initiatives for many causes.

William Tan in Antarctica

For seven years, he returned to Boston from Australia, Europe or Singapore to race for Jessie. One memorable year (2004) she sat on his lap while they crossed the finish line of the Boston Marathon together. After she died, he raced in her memory. He has given away his medals to both Jessie and her sister Sarah, calling them his heroes.

Ironically, a few years ago, William was diagnosed with leukemia and underwent a bone marrow transplant, much as Jessie had done. He has survived to date, but the disease and its cure have created complex health issues for him. He cannot travel to the USA now, nor can he race at this time. Instead, he inspires people through his daily choices and actions … finding ways to keep going, to demonstrate his indomitable “will power” and to make a difference regardless of the challenges that he faces.

Today I wish the Marathon runners well. Especially those, like William, who have chosen to make this event more than just a personal triumph; it’s a way to educate and empower others, too.

Links to past family blogs about our family’s annual Boston Marathon adventures with William Tan (older journals aren’t archived online):

Apr11

6 Word Bio

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What would you say about yourself if you had to capture your identity … your story … in just six words? Or at least your current state of mind and place of heart in this very moment?

It’s an exercise called the “Six Word Memoir” by SMITH magazine. You can create one, too, and add it to their online collection. They invite you to be brief and inspiring on many subjects, ranging from love and peace to the planet and work.

Trust me, it’s not as easy as it sounds, summarizing a topic (such as your favorite cause) with a few well-chosen nouns, verbs, adjectives, adverbs or what-have-you. Which ones are true? Provocative? Meaningful?

It’s like trying to compress a series of novels into a haiku. Hah.

self-portrait with words

Here's my 6-word "bio" and portrait created during our 2012 annual Women's Spirituality retreat.

We were introduced to that concept during a winter workshop led by fine art photographer Terri Unger and writing teacher Kelly Schwenkmeyer. They changed the idea, though, to include a spontaneous portrait while holding up our six-word memoirs as posters. It’s a concept they’ve used in several formats while leading classes for students of many different ages. Feel free to check out Terri and Kelly’s Facebook page for more information about their workshops.

I belong to First Church‘s lay-led women’s group which meets monthly during the school year. We also host a one-day retreat each year. For the past several years, I’ve helped identify facilitators and instructors, and worked with Rev. Rebecca Pugh to weave together an annual retreat program. Attendees range in age from teens to seniors in their 70s and 80s. We’ve done everything from hula-hooping and belly-dancing to creating prayer wheels, walking labyrinths and learning about bee-keeping. Our members have a wide variety of gifts and abilities; we create inclusive programs that involve reflection, creativity and education with sensitivity to the differences and commonalities among us. The programs always offers a way to challenge and nourish each of us.

Anyway, above is the result of one of those exercises from this year’s retreat. And it’s a good way to begin a birthday. :-)