Tag Archives: Mother

Oct27

Boots, Birds and Good-Byes

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On a difficult pair of days, I wore a pair of high heeled boots, hid behind a costume, became vulnerable, wept, prayed, painted my nails, felt incredibly lonely, connected with special people, remembered those who are gone, and was visited by a winged messenger.

There has been a long silence from my end. Again. It’s been a few weeks of logistics such as deadlines, papers due, mid-term exams, and also … yes, pushing through difficult milestones such as the birthday of a departed friend and the anniversary of the fifth year since Jessie died.

Once upon a time, I wrote every day of Jessie’s treatment, and continued every day after she went on ahead of us, recounting the journey of the living. Now it takes me a week to reflect, in writing, about such moments.

Two days come close together last week. Both are difficult. One is the birthday of my friend Rebecca, who died of breast cancer a few years ago, after a long and gracious life, making a difference in the world of so many people, but especially her family, and most of all her two beloved children Ben and Anna.

Her headstone is only a few yards from Jessie’s, beneath a row of maples, at the top of the hill in the cemetery. Rebecca knew their spots would be close together. We visited those cemetery locations together. Stood while Rebecca was alive under the long shadows of old maples on young green grass, listened to songbirds, felt the stir of the wind, heard  its murmur through the leaves. Made memories up there. Had conversations we often couldn’t share with anyone else, about worries and wishes, realities and dreams, sorrows and hopes. Rebecca lived with a persistent form of breast cancer, and navigated a fine balance of hope in the possibility of a cure or new treatment, the wish for longevity and survival, edged with awareness of a threatening and mortal condition. Rebecca talked about a visit she had made to the cemetery with her family; wanting them to have a living experience with her there, as well as a place to visit in later days. We talked about where she and Jessie would both be (Jessie had already died, but we hadn’t interred her ashes yet), and how they’d be close to each other in the spaces between the maples, and imagined how maybe they’d find each other in the place beyond this one. We believed that Rebecca and Jessie would continue to visit those of us that they left behind, back here on earth.

The very next day marked the morning, five years ago, when my daughter Jessie died. Every year our family approaches this milestone differently. It is a markedly individual and separate experience for each of us as sister, father or mother. And of course, it is a day marked by our extended family, friends or her community, too.

This year, on the eve of the anniversary of Jessie’s death, I found myself locked in memory loops and traumatic flashbacks of the last 24 hours of her life. Vivid images or sensory memories came back. They blur together like this: her lung x-ray looking worse that last full day in ICU, followed by visits of specialists to her bedside, and a phone call conference from a small meeting room to consult with Chris and several medical team leaders to decide a recommended course of action, an evening visit from one transplant care team nurses who believed she’d make it, Jessie waking up that night and braking through sedation to kick and reach for me as I told her we loved her and named each member of her family, holding tight to her hand, 2am worries and conversations with a night-shift nurse as we changed her bed padding and checked IV lines and monitors and breathing tube, later kissing her as they took her off the floor — still medicated to a level of unconsciousness while on a portable ventilator — to undergo a lung biopsy, pounding on doors to get through to the room where a doctor waited to tell me she was dying, sitting in a numb disconnected state while a white-coated medical fellow knelt before me to deliver the unthinkable narration of events that transformed a scan room into an emergency operating suite, knowing our friend and minister Rebecca was beside me every step of that morning, and that Rebecca made the calls I couldn’t make, knowing that Jessie died while Chris and Sarah were en route to the hospital, walking with Chris and Sarah together as if through a gauntlet one final time down the hallway to her room in ICU, where it wasn’t Jessie waiting anymore, just her lovingly arranged body under a quilt, so we could say good-bye.

This year, those scenes – running on endless replay in my mind — recurred over and over. Sometimes scene-by-scene as they really took place. Sometimes as if I rewrote history and changed fate.

If only we had the power to change the script, stop the camera, halt the action, decide to make a different ending, give all the actors new lines, new roles … if only it was make-believe, fiction, theater … not real. But it isn’t. It happened. And there are no sequels or second versions of this particular story.

Of course, I have other beliefs about what comes next. About a spiritual life beyond this one … but admittedly, there is a difference between that spiritual and emotional comfort and the very physical and mortal reality of a child you can read to, speak with, hold close, argue with, sigh about, worry over or dance with.

During the anniversay of Jessie’s death, I always set aside productivity. I don’t do school work or client projects. I cancel any appointments, skip most commitments.

Instead, I give myself permission to be in the moment and experience whatever comes. To make space and go through this, because it will catch up to me one way or another.

It isn’t a day when someone needs to fix what’s wrong. It is simply … an unspeakably sad and moving day. A time when we are permitted to weep or pray or be pissed off or act off-the-charts giddy or stay silent. A time when we experience the feelings that are natural to such milestones; and almost every possibly emotion is likely to surface, visit and be expressed along the way.

On such an anniversary, I don’t have many expectations about what will or should happen. I may lose myself for part of the day. Or find Jessie all over again. Connect with Chris or Sarah, if possible, on this day. Retreat. Or be in the company of friends. Mourn. Remember. Acknowledge. And yes, celebrate.

We often try to experience some of Jessie’s best-loved activities on this day. For instance, my friend Martha got me started on the self-care and healing of pedicures and manicures. You may scoff at this self-indulgent choice, but it is a place of respite where no one expects anything of you, someone takes care of you for a little while, you float and let go, and you even feel a little better (or prettier, or something) on the other side of it. I did it again this year.

And this year Chris and I attended the Rotary Masquerade fundraising ball that evening. It happens every year; it just fell on the same night as Jessie’s anniversary. And what better way to celebrate her vibrant spirit? She loved dressing up, going out to dance, to be with friends.

I dared to wear a pair of black high-heeled boots and a short skirt and a wig. I was someone else: pretending, letting go, running away, wishing, and forgetting. And I was myself: grieved, sad, lonely, determined, giddy, connected, remembering, and living ‘in the moment’.

Underneath the black lipstick, fake eyelashes and sequined outfit, I was a mother thinking about both of my daughters: my beautiful intelligent grownup daughter putting away her textbooks and going out with friends to the night-life of cafes in Thessaloniki during her first semester abroad in college in Greece and my younger child whose ashes rest beneath a headstone graven with her name, marked that day by a blossom and a crimson leaf. Under the red-and-black wig, beneath the black spider rings, I was a friend who asked the opinion of girlfriends about makeup and party outfit, wanting someone to cheer and encourage me for risks to self-image when I wore an edgy costume. In the black boots and red silk top, I felt like a vamped-up sexy wife on a date with my husband, spending time together on a day that holds deep and surreal connotations for both of us, in a year that has been full of exhausting transitions, some wonderful, some challenging. Dancing among peers in masks and feather boas, capes and fedoras, applauding the band and jumping to the rockin’ music, I was one member of a club and a community that showed up to raised funds for local causes.

We aren’t binary: black-and-white, one-or-the-other, either-or. We, as humans, are so much more complex and layered and intricate and impossible to unknot or explain. We are just … who we are. And different, every moment, every day.

The next morning, I woke to the rush of wings as a bird fell or was knocked down my chimney. It emerged, eventually, from the hearth in our bedroom to circle and perch in our room. A common bird, familiar and full grown. Dark-tipped, pale-chested, bright-eyed. We caught it in a net and released it safely out the front door.

What do I believe about the sudden fall and flight or that common backyard bird that often visits the feeder outside our kitchen window? For me, its sudden arrival represented the visitation of a winged messenger, a spirit guide. A reminder that she’s here in many ways, and somewhere else, too. (You’re welcome to your own thoughts about it … whether you believe its coincidence or meaningful.)

The eve of Jessie’s anniversary, I relived nightmares. The day of her anniversary, I ‘got by’ in fancy nail polish and high-heeled boots she would have liked a lot. The morning after her anniversary, I participated in a startling and sacred moment.

And I am reminded, and I remind you, that we are connected. Body, mind and spirit. This world and the next world. All of us, always on a journey, perhaps in different places along the way, but not so far apart as we sometimes feel or imagine. Nearer than we suppose.

Sep17

Partings

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Today Sarah joins her college classmates and sets off by plane for Greece. She’ll study nursing in Thessaloniki for three months. Probably visit other cities, and even other countries, while she’s there. She’s considering more travel around Europe after the semester ends.

Why not? She’s young. Relatively footloose and commitment-free. When is there a better time?

And what can substitute for life experience, when it comes to education? Books and professors are great. They give us context. Theories. Even practical ideas that we can apply in the real world.

Yet lessons often come the other way, too. Firsthand. In person. As realities that we handle and experience. Eventually, to make space in our minds and hearts for greater understanding, we must touch, see, think about and feel events, cultures, people and ideas for ourselves. We cannot fully appreciate the similarities and differences that make the world so complex — sometimes beautifully so, other times tragically so — unless we take the chance to engage it.

She’s traveling to the second-largest city in Greece, steeped in history of many cultures, ethnicities and faiths. For instance, some of its inhabitants appear in the sacred text of the New Testament in letters from the Apostle Paul; she’ll walk some of the sacred sites I’m studying in books. She’ll reside in and explore ancient ground that was holy, thousands of years before Christianity was ever born, populated by Greek deities and temples. She will live in the multicultural realities of a city that was once a bustling part of the Byzantine empire, became a sanctuary for Jews outcast from Spain for a period of about 400 years. It joined the Greek nation in the early 20th century, burned in 1917, was largely rebuilt, and was home to thousands of refugees in the wake of a ‘population exchange treaty’ between Greece and Turkey in 1923. It remains a vibrant and diversely-populated place. For more detailed information, visit www.greecetravel.com/thessaloniki/introduction.html

We’ll stay here in Boston. Say good-bye and watch her walk across a threshold. It’s a coming of age moment, as she launches herself into the world, to learn lessons from her college classrooms and other lessons on the streets or in the cafes, shops, and other hangouts around the city.

I expect, as we say good-bye, that she will continue to experience her own partings. She’s leaving behind her high school self. Her friends are all already on their college campuses. Or finding jobs and moving away from home. Or serving in the military. Beginning the next phase of their young adult lives. Sarah, too, will let go of childhood and start anew.

When she walks through the security gate and later through customs, she will be walking into a new world. And a new part of her life.

And here? Though we aren’t flying away, but staying home, we’re also beginning the “next step” in our family life. Whatever that might mean … whatever shape it takes … big house, empty rooms, long work or school days, late nights, early mornings … two of us trying to make chances to connect. Finding purpose in our adult lives, now that we have started Sarah on the path to her own life apart from us. And always, the way parents do, thinking about both of our daughters.

Somewhere, Jessie fits into this transition. We’ve said good-bye before. Farewell to Jessie was different. This day, as Sarah waves and joins her classmates, this is the good-bye you’re supposed to say to a child. It means you’re doing what you should, helping your child take steps toward adulthood and independence.

After all, it’s not permanent. It’s not forever.

Yet we also realize … the young woman who comes home again after her adventures… she will be Sarah. But she will be a new, changed, more mature and experienced Sarah.

Sure, I thought I was ready to let her go. Stoic. I knew, cognitively, what this separation meant. I talked myself through it. Rallied around its importance and symbolism. Believe it’s good and right for her to do. But there’s a difference between knowing something and feeling it. It’s easy to know something with your head, but much tougher to live through it with your heart.

So I thought it would be easy enough to get ready and say farewell, because this departure has been happening in stages for several months. Years, even.

Yet we’re all on edge. Trying to be gentle with each other, but equally prickly and moody and temperamental. Right now, we often say or do the wrong thing, as often as we make the right choices, to help each other through this good-bye.

My husband I will be different, too. All of us – humans — change. Nobody is static, fixed to one moment in time and space, unable to transition. Life and consciousness itself is a response to stimuli. All humans, even when we feel stuck, are somehow in flux, moving, transforming.

We’ll all get through it. And blossom on the other side of the transition. Yet that doesn’t make the moment of parting any easier. In order to hold the love, you must also hold the pain.

Sep8

Beyond Appearances

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Did I ever tell you? About my first time getting painted toes, and my misconceptions about the woman getting a pedicure in the next chair?

First of all, I was introduced to pedicures at the age of … I’m calculating … give me a second to do the math … um, age 41. Basically many “salon” grooming experiences such as waxing, massages, hair-coloring, manis and pedis … are relatively new to me. I wasn’t exposed to them growing up.

As an adult, my girlfriends have slowly introduced me to these wonders. Or talked me into having my own firsthand experiences, and deciding for myself whether I want to invest in them regularly as a personal habit, rather than a one-time indulgence

So one of my dear friends took me out for a day of pampering.

There was an extra reason for this outing. It was just a few weeks after my youngest daughter Jessie had died. I was still shell-shocked and trying to cope with loss. My friends were taking turns getting me out of the house in gentle ways. Going to the salon was a chance to let go, let someone else take care of me. To escape and float.

First we ordered frothy chai tea lattes from our favorite coffee shop: Zumi’s. Carried them next door the nail salon. In our flip-flops, because of course you don’t want to ruin your paint job at the end of the session by shoving them into closed-toed shoes. (That’s one of the things I learned.)

The biggest decision of my day was what color to paint my toes. Should I choose something feminine and pink? Something bold and crimson? Something dangerous and midnight dark?

Or something else? I plucked through the bottles of color. Chose five pigments. Mentally recited middle school science lessons: ROY G BIV. (Hint: that’s the acronym for the colors of the rainbow.) I gathered up a palette of visible light.

After selecting our polishes, we settled into overstuffed chairs and put our feet into tubs of hot soothing water. Sat side by side with books and magazines. Sipped our tea.

Staff women knelt down and started scrubbing and massaging our feet and talking to us. I tried not to think about issues of class and subservience, of manual labor and contrasts of privilege. Me in a chair, and someone crouched low before me. Me paying money for someone else trained to soften my feet, rub off the callouses, and make me pretty and desirable

It was so different from the hospital. From necessary invasive procedures and toxic drugs introduced into a body by highly trained nurses and doctors to save or extend life.

I didn’t want to talk. I retreated into silence. Used my book as a shield to ward off conversation.

The pedicurist settled down with a brush and file and clippers. I held my breath and tried not to mind having someone else handle my feet. But I couldn’t distract myself by reading.

So I glanced up from a novel to peek around. I looked at the woman fastidiously cleaning my toenails. Glanced left at my girlfriend reading her magazine.

Peeked right at the salon’s other pedicure client. She had sunk comfortably down into the upholstered wingback chair next to me. Relaxed. Chatting with the woman doing her nails.

She’d chosen a bottle of lady-like pearlescent pink polish. It seemed to fit her. She was tidy and trim, the glint of silver and precious stones a subtle wink on fingers, wrists and ears. Her short perky hair, tucked behind shell-like ears, was almost platinum. To hide her grey, I told myself, guessing her age to be least two decades beyond mine.

She wore linen. Kept a designer clutch tucked down into the cushions by her side. Lifted one hand and shook a Tiffany bracelet down over her wristbones.

You get the idea. She came accoutered in labels and brands. Ones I don’t own and may never be able to afford.

I couldn’t read anymore. So I closed my eyes and tried to relax through the filing and clipping of my own toenails.

And eavesdropped on the salon client’s amiable banter with the staff member giving her a pedicure. I learned that the woman on my right lives a few towns away. She likes this salon, however, and comes here regularly. She and the staff members are on a first-name basis. They talk about pets and kids and vacations and doctors. She’s comfortable here.

But she has a lot more money than the ladies that own or work in the salon. Or me.

I made assumptions about her. It’s amazing how catty you can be, even in the midst of grief. I wanted to find fault with her…maybe I was understandably irritable, poised to be annoyed and critical. Maybe my judgments were out-of-proportion, because all of my reactions were extreme right after my child died. Or maybe I’m just a selfish and petty person.

The town this salon client lives in has a noticeably higher tax bracket than ours. More conservative politics. Lots of wealth and generations of breeding.

From my perspective, she comes from a bastion of privilege … and I was predisposed to think poorly of her because of it. Or at least to think that she couldn’t possibly comprehend the depth of my loss, and the great yawning chasm that was broken open inside me, just below the surface of my closed eyes and clean toes.

I assumed she was shallow and spoiled.

After all, she was sitting in a nail salon on a weekday afternoon. Gossiping. (I was in the nail salon at the same time, but I was silent, and we were here for different reasons, right?)

Although we were seated side by side, with women crouched in front of us cleaning our toes, we didn’t really have anything in common. Not like my girlfriend sitting in the lefthand chair, who is a college-educated working mom like me, with kids about the same age, and enough flexibility in her schedule to make a date with me in the middle of a workday. A friend who knew my whole broken family and my deceased daughter and was gently trying to draw me out of the house and back into the light of day.

The woman on my right, talking about Cancun, was not like me at all. Obviously she had plenty of time and resources to indulge herself.

She couldn’t possibly understand why I was in the salon. Or that it was my first-ever pedicure. Or that I was living through hell.

Or what hell even felt like.

I tried to stop listening to their stories: the client and pedicurist. I didn’t want to know more about their plans and their lives. I just didn’t have any tolerance for mundane, everyday experiences. Like which doctor to visit to have a mole removed. What airline to take to Mexico. What yogurt to keep in the fridge.

Behind my closed eyes, didn’t I radiate waves of pain and anguish? Couldn’t everyone just SENSE my grief and loss as I sat in the overstuffed chair?

How could they talk about their normal lives when I was mere inches away, full of turmoil and sorrow and anger?

I was in the salon because I was fresh from the pediatric hospital and its traumas. Recently recovering from the experience of planning my child’s funeral. I had a reason … a good reason … to take a break. What was everyone else’s excuse?

The pedicurist dried my feet, put the foamy separator between my toes to spread them out as she worked. On her worktable were the colors I had chosen. I planned to wear red-orange-green-blue-violet on the tips of my feet.

When the pedicurist saw my array of colors, she hesitated. One on each toe?

Yes, a rainbow. I didn’t explain why. I couldn’t, without weeping. But my girlfriend knew the reason. The colors were selected in celebration of Jessie and her bright spirit and her flare for fashion and her favorite song “What A Wonderful World.”

The smallest toes would be bright red.

I opened my eyes as she uncapped the first bottle and dipped the brush into the sunrise-colored pigment.

The woman on my right was just about to have her color applied, too.

She looked my way. Noticed the rainbow of colors down by my feet … because honestly, during a pedicure, you always want to know what color your neighbor has chosen, and wonder if you’d be brave or foolish enough to wear what they have dared to put on themselves.

She arched a plucked brow. Lifted her left hand, curled her fingers into her palm, and adjusted the silver links on her wrist by waving it gently in the air.

She smiled lopsidedly at me with coral lips. This woman with plans to go to Cancun, and a mole that needed attention, and children off at college. And time for a pedicure on a weekday afternoon.

She wanted to chat. I didn’t want to, but I was curious what she’d say.

“You’re using a lot of colors.”

Her sentence lilted upward at the end. An innocent question. Why so many colors?

I inhaled before replying. The honest answer took an act of will and lots of practice. But I was determined not to back away from the truth, even if it was uncomfortable in casual public and social settings like this one.

“It’s in memory of my daughter. She died recently. Leukemia.”

“Ah.” The woman lifted her eyes to meet mine. Tucked a strand of artificially blonde hair behind her ear. Winced and nodded slightly.

I thought that would be the end of the conversation. Death is often of a conversation-killer.

But her eyes held mine, and she continued. “I started coming here a few years ago. Just to treat myself.”

I nodded back politely. Tried to smile. Nicely.

Inside, I ranted at her. So what? Do you think I care? You and me. We don’t really have anything to say to each other. We’re not going to bond over these personal truths that we share in a salon. We have nothing in common.

Yes, I was also here for a break … but our reasons for needing the respite … I could only imagine that they were dramatically different.

Then this woman from a wealthy community a few towns away, from a background of breeding and privilege, and a life that involved tropical destinations and indulgent salon appointments, said, “My older daughter and my husband were diagnosed at the same time. They were both treated. My daughter survived. She’s back in school now, but I had to take time off and go take care of her for a while. My husband didn’t make it. That was a few years ago.”

She looked down at her toes. Wiggled them in the water. She added softly, “I like coming here.”

I swallowed every assumption I’d made about the pampered matron in the chair next to me.

We sat next to each other. Didn’t make eye contact again. Or speak anymore. But we both relaxed, or at least it felt that way to me. As if we were suddenly comrades. With a shared experience that assured that we understood each other on a gut level.

Not strangers anymore, but intimately connected by a common experience. Side by side in the salon, letting someone paint our toes bright colors.

I appreciated – suddenly – that the color of our toes was our warrior’s paint. And the late afternoon moments in the nail salon are a strangely private opportunity, removed from the usual demands of life, to acknowledge sorrow. To breathe and let go. To retreat.

And that this woman, despite all the contrasts between her world and mine, her life and mine, has a lot in common with me.

I was humbled by what I learned that afternoon in the salon.

I realized – all over again, because I had clearly forgotten it — that appearances really don’t tell the whole story. That the woman next to me … whether we meet in a doctor’s office or in a grocery store aisle or on the bus or by the sidelines of a playing field or sitting in a nail salon … has her own story. And each story is worth hearing. And that it’s much more beautiful and colorful and poignant than all the fiction and preconceived narratives I might allow to fill my head.

Her story was right there, waiting to be shared.

Every woman has a story to tell. And we may have more in common than we’d ever guess. If we’ll just listen. Oh, and take the time to sit down and choose some colors and get our nails done.

Never apologize for a good pedicure or “spa day” at the salon. It can change your life. And you deserve it. We all do.

Sep6

Belonging

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I just read, in an essay by Karen Montagno entitled Midwives and Holy Subversives, her description of the many circles of belonging in her life. She says, “My story is one of overlapping contexts. … I am an African American woman … instructor and practitioner of pastoral care, an Episcopal priest in a local parish, a seminary dean, and a parent. My communities are multiple, significant, and formative.”

It resonated with me. It’s really true for all of us as humans. I don’t mean that I identify with Karen Montagno’s unique and specific context, but with the more universal observation that we all belong to many overlapping circles.

Today I reflected on some of my circles.

In my life, you won’t be surprised that I put family first: my own birth family of grandparents, parents, aunts, uncles, cousins and siblings. My husband, with whom I have shared a longer relationship than anyone else in my world, except my mom, sister and two brothers. My nieces and nephews. My extended family through marriage, with whom many special moments (happy and sorrowful) have been shared. And foremost, my daughters Jessie and Sarah.

Then there are so many other webs of connection. For instance, there are circles of social ties. Personal friendships developed across years of proximity and shared experiences, forming complex bonds that include raising children together, being single or inside marriages or partnerships, changing careers or relocating homes, setting and reaching for personal goals, and so many other milestones that we share with our intimate ones. Acquaintances through different organizations or shared interests … maybe we waited together in the schoolyard while picking up or dropping off children at class, met in line at Zumi’s, or sat side by side on the sidelines of a soccer game while our kids played in a game.

Then we have ties to our colleagues and peers in the workplace or the professional field; we share significant time together and many responsibilities. Plenty of us also dedicate time to service or volunteering in different organizations: mine happens to include Rotary Club and some civic organizations. And for many of us, this also includes our faith community, where we spend a rich amount of time that is deeply emotional and intellectual, but also involves engagement of much time and talent: many folks invest a lot of their lives in this sphere. And there are other connections to mentors and coaches and teachers. Plus more occasional and yet oddly intimate transactions with other people on whom we depend in some way, whether it’s a medical caregiver or a counselor, or perhaps the person working at the cash register in our neighborhood, or the train on which we commute, or the circulation desk of the library we visit. (I’ve also recently added a campus community. My professors, students and advisors. The staff and peers with whom I now spend several hours a day.)

And of course, we can identify with larger contexts. By ethnicity. By gender. By faith tradition. By sexual preference. By political affiliation. By nationality. By so many “markers.” I thought a lot, this past week, about the labels that are placed on us. The categories used to define us. The ways we are perceived by the world, and the ways in which we describe ourselves. Some of these labels and tags may be welcome. Many are probably weighed heavily with assumptions and preconceived ideas that we would prefer not to accept or have applied to us. It is wise to be thoughtful about these labels and categories. And to challenge how you many be applying them to others as well.

Today I’m glad to be the following things:

  • Mother
  • Wife and partner
  • Woman
  • Sister, daughter, cousin, niece, aunt
  • Friend
  • Christian with an open mind about other faiths
  • Member of First Church, Ipswich, UCC
  • Rotarian
  • Professional website developer and writer
  • Director of non-profit foundation working with cancer families
  • Graduate student at Harvard University’s Divinity School
  • Commuter by foot and train
  • Resident of Ipswich, Massachusetts in New England, USA
  • Independent (political party)
  • Writer
  • Artist

There are lots more circles of belonging, I’m sure. I belong to so many communties, large and small. And I have responsibilities to all of them. I feel a little overwhelmed when I consider all that I’m trying to balance right now. I bet we all do, at one point or another. So I consider my communities. I make checklists and put dates and commitments on the calendar. Prioritize. Do one thing at a time. Breathe. And try to do what’s possible and relinquish what I cannot do right now.

Meanwhile, here’s something that all adults who are legal citizens can do for their community. Vote! In Massachusetts, the primaries are today.

Voting is not just a privilege. It is a responsibility. It’s your chance to act. To speak with your vote. To care and be engaged in issues that affect you and your community. To the places where you live, work and play. The people with whom you belong.

Aug31

Doing It All

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Does this sound familiar to you?

You’re in the middle of a significant event. Everyone is quiet, listening intently. The entire space is hushed, leaning forward, catching the impressive, weighty, world-changing reflections of an august speaker. And then you hear a little one call out, unimpressed by all the pomp and circumstance, the most important words in her world, “Mama!”

Yesterday was an event called convocation. The new Dean of our school spoke to the incoming class. The professors processed in their caps, gowns  and colors. We listened to flute and trumpet. And a moving message from the Dean himself about the role of religion and spirituality in today’s conflicted world.

Students and faculty attended. Family attended. And as it turns out, very young children came along.

This is a small college on a large campus. It’s built around community. And that’s more obvious than ever, when students or staff bring their babies and toddlers to the formal events.

The child calling out? She put the entire experience into perspective again. It would be easy to take ourselves too seriously. Indeed, the Dean poked fun at Harvard’s view of itself as the oldest college in America, and teased all of us because he graduated from a British college that is over 600 years old. Much of his reflection (and his gift as a writer and teacher) is to humanize, with individual detail, larger issues. As a little one in her parent’s arms did for us, last night.

I believe the faculty on this campus understands that most of us are pulled in many directions, and fulfilling many roles in life. They are, too, although there’s probably an idyllic and abstract tendency among some of the them who live almost exclusively inside the academic bubble of the Harvard community. Contrarily, many gifted faculty also travel all over the world and work outside academia, too, and bring their real-world expertise back into the classroom.

I’ve been on campus all week, with n0n-stop orientation and info sessions. I’ve been so busy with these events, that I didn’t read the text on my cell phone, from my daughter in Italy. Or the one from my husband. I postponed replying to emails from clients. I couldn’t talk to friends. Yet I’m needed in all those parts of my life, too. Next week, when the schedule starts to settle down, I hope I’ll find more balance.

For now, I’m part of a small class of students with diverse backgrounds. Their average age is 26 … much younger than me. But I’ve met a handful of people in my position … returning after decades of life in the working world, with settled homes and families and careers, now going back to school for some reason. People from several nations, and all over the country, with all sorts of goals for their degrees.

It’s my experience (after a few days of orientation, so take it for what it’s worth) that the college welcomes us as complex people with multiple roles in our lives. Yes, I’m a full-time college student again. I’m also working and available to clients. I’m a mom with a college student who will need support from time to time. I’m a spouse who’d like to be present in my relationship. I’m a volunteer for several organizations. I’m a friend with connections to tend.

Andover Hall

So I was a member of the audience listening to HDS’s Dean, David Hempton, speak. Trying to catch every word, as we gathered outdoors under the tent on a bright August evening, at the close of summer and coming of fall, with Andover Hall in the background. He offered his first words addressing the school as our new dean.

And then a classmate’s child cried out, “Mama!” No one paused to frown and criticize. There wasn’t a gasp of outrage. A patient father went off to get a red plastic wagon. A mother (and student) escorted her young daughter inside, probably to the bathroom. In the rear, a baby gurgled.

Education in the context of life. The dean’s words at the front of the tent. The baby’s call for “Mama” in the back. I think they “get it” about life and equilibrium. I hope so. It’s why I believe I’m called toward this vocation. You can’t really separate these parts of self: mind, body and spirit.

Aug14

Nominated and Disqualified … Every Day

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I have a friend who frequently says, when something has gone wrong while parenting one of her three kids, “They took away my Mother of the Year award today.”

I guffaw every time. I must lose my “Mom of the Year” award about … oh, nine times daily? Okay, maybe only five times daily. But since I only win it back twice a day, then any way you count, I’m not gonna get that shiny special certified-blue-ribbon-and-gold-engraved-plaque-with-my-name-on-it recognition. (Does anyone actually give out such an award? Hah.)

At least from a child’s perspective, fairly often, our “Parent of the Year” awards ought to be rescinded. Whether you’re wrestling with a toddler in a public place and trying to keep your cool while you listen to “No-no-no!” or try not to throw up your hands in total exasperation when a teen shouts for the umpteenth time that “It’s just not fair! You don’t understand! You ruined my life!” … you’re in a tough no-win situation. As parents, we are often perceived by our children as imposing unjust rules, expectations, duties and standards.

In the end, we are the buffer between our children and the world. And sometimes that means we’re incredibly tender and gentle with them, when no one else would be. And other times, it means we’re tougher on our own offspring than any military officer or high court judge would dare to be.

Meanwhile, I’m sure you’ve been told that everyone else’s mom or dad does “it” differently. Better. Or even worse … better-er-er.

And who will remind you … except a very patient spouse or partner (if you have one), your girlfriends, or yourself (yes, you talking to yourself) … remind you that your own child’s view is a little biased? In this example, tipping toward the negative side. Who will remind you that maybe there’s another frame of reference, a different viewpoint, or an alternative interpretation that actually validates your worth and judgment? (Just give it five minutes, the mood and opinion will swing in the other direction anyway.)

By now, you know that I’ve lost one child to cancer. So yes, I cherish the opportunity to watch my eldest daughter grow up. But we have plenty of differences, skirmishes and challenges as she matures into an independent woman, and I remain a … mom. We’re the same as every other family. Nothing idyllic here, just real and messy.

Now let’s be fair. Sometimes we share good stuff. For instance, I hear treasured words such as “Thank you.” “I’m sorry.” “I love you.” “Can you help me?” “I’m so lucky to be in this family; I wouldn’t trade it.”

Sometimes she lets me into her life. And we occasionally have crazy fun together. Just yesterday we spent the day in Boston, after filing her application for a student visa at the Greek consulate. We did things she hasn’t experienced since she was much younger, such as eating Italian ices, riding on the swan boats and wading in the Frog Pond.

Yet these good moments between us continue to seem … more rare than I might wish. Each one is placed like a deposit into my emotional mothering bank account.

Right? Mothers (and fathers) save up positive interactions with daughters and sons. We stockpile them, as one of my girlriends (aka, mom-friends) phrased it. Then we withdraw those memories of good moments again during the difficult interludes (arguments, silences, slammed doors, disappearances, misbehaviors, rolled eyes and all the rest).

Several weeks ago, one of my girlfriends leaned on the kitchen counter and sighed, “Isn’t it sad that we’re grateful every time they show affection? That we hoard these moments, because we need to know they can happen?”

Whether our children are aged three months, three years, or only three months away from legal adulthood … our offspring can be both our biggest fans and also our fiercest critics. Additionally, while they may be unimaginable blessings in our lives, they also represent some of the most challenging relationships we’ll ever know.

We, mothers and fathers, need our collection of good times to offset the hard ones.

Because we – moms in particular, I think – will often be the targets of their wrath or sorrow. In the eyes of our children, we are the “bad guys” — the instigators — the source of much of the unfairness and injustice and petty cruelties in their personal worlds. They have such deep, unfiltered connections to us … such bonds of love and kinship and every other possible emotion … that we’re also the most likely, the most easy target for any troubled moods they might be experiencing.

Of course, as a mom or dad, you don’t set out to ruin your kid’s life. Far from it. You think you’re being supportive.

Do the tally. Meals you prepare. Laundry you wash and dry. Clean-ups you do. Rides you give. Errands you run. Money you loan. Appointments you schedule. Forms you fill out. Games and performances you attend. Negotiations, talks and interventions you undertake.

Or the softer, more emotionally-intimate interactions, which are harder for some families to achieve. Sitting down at the table together. Asking about a child’s day. Listening. Playing a game together. Engaging in an activity such as a book or a workout. Sharing rides and talking in the car. Working on a family calendar and making plans for time together. Maybe daring to reach out and put a hand on her shoulder or draw him into a hug.

Every one of these logistical or content-rich items is an act of love. Each one demonstrates the tangible value of your love for your child in time, energy, focus, commitment and love.

This is your parental love in action. Every day. All day. All week. All month. All year. Every year. From the moment of conception until right this very second.

It all adds up to a whole lot of love.

Unfortunately your child doesn’t measure the same way you do. She’s got her own frame of reference.

Your child is tuned to a whole different range of messages. What you do and say, and what she sees and hears, are very different. She listens for tone of voice. Watches for facial expressions. Body language. Perhaps you believe your words and actions convey affirmation, affection and assurance. Or you think they do. Your child detects something else: frustration, criticism, doubt, worry, disappointment, anger.

Due to the many traumas that have shaped our family, we have worked individually, or in parent-child combinations, and sometimes as a family, with counselors. Before and after Jessie was alive … we worked on these issues.

The professional wisdom that I have received has been specific to girls, not boys, since I raised daughters, not sons, but some may be universally applicable. A few counselors have stated such tidbits as:

  • If your child cares what you think, and engages in fights with you, you’re actually in good shape. It means she (or he, since I assume it could apply to both genders) feels bonded with you, and she’s invested in the relationship. She’s trying to connect, albeit in a tough way.
  • When she stops caring about anything you do or say, that’s when you should worry.
  • It’s okay to express your own emotions. Within reason. It’s instructive for your child to know you have limits. That you can, in fact, be hurt by her words. That you expect to be treated with respect. That you have boundaries, and if she crosses them, you might lose your temper and raise your voice.
  • Listen, listen, listen.

You are, shockingly, human! Where you love, it’s difficult not to be open to pain, too. You can easily inflict damage. You can be bruised in return.

There’s a balancing act. Yes, sometimes being a mom or dad is really rewarding. I can see more and more of the adult our daughter is becoming; I like and admire a lot about who she is, as she grows up.

Other times, we’re both one big knot of hurt. She’s in pain. I can’t seem to “get it right.”  We both feel broken inside.

In such times, I ache down to the marrow and deep into the gut. I’m exhausted. Tapped out.

I’ll bet it’s familiar to other parents, too. Sometimes you want to quit this job. Except there’s no “exit” clause. (Sure, some people have chosen to bow out and disappear anyway … but that’s another topic … and I have been humbled when I dared to have an opinion about such situations, because I cannot be inside someone else’s head or heart, and know what decision is best for anyone else to make regarding their own relationship with their child … what each adult is capable of giving, or losing, or if, indeed the greatest act of love is sometimes to walk away.)

In general, for parents who stay in a familial relationship with children for the long haul, and put in the time to be connected to your offpsring, you hit bottom sometimes. Your can’t seem to connect with your daughter or son. Perhaps for reasons outside anyone’s control.

Whatever the cause, that’s when you may feel as if you just withdrew the very last penny out of your emotional parenting savings-account. We are all, at times, virtually bankrupted (emotionally, if not literally) by the complex and challenging experiences that are still so frequently part of our lives as parents.

That’s when you need a good laugh. A deep breath. And someone to tell you that you’re a good mom. Or a good dad. Assure you that what you’re investing in your child is worth every grey hair and wrinkle, heartache and clenched fist, bitten lip and worn-out pair of soles. Believe that someday she’ll realize it. Or he’ll acknowledge it. Someday.

Who cares if your kid takes away the “Parent of the Year” award that they nominated you for about 12 minutes earlier? You don’t need a medal or a pin or a plaque. That’s not why we do it, right?

But hey, it helps to know that someone believes in you, when you’re in the middle of second-guessing yourself for the gazillionth time, and there’s no voice of reason to tell you differently.

That’s what today is for. I’m putting a deposit back in your parental savings account. Today, I’m going to assure you, “You are the best at raising your child. You are a specialist. No one else can do it better. You are a good mom. You are a good dad.”

Really, you are. (So am I.)

Aug6

Time: Then and Now

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I recently teased my friend’s daughter, almost outraging her, about freezing time so that she can’t grow older than 14 years. She is reaching for everything that comes after this year. High school. Summer jobs. Learner’s permit. Driver’s license. Voting. Graduation. And everything beyond that.

This young lady is the same age that my youngest child Jessie would be, if she’d continued to grow up.

Isn’t it provocative, to consider what you’d do if you could slow, stop or reverse time? It’s certainly been the subject of many stirring and playful plots by authors and screenwriters over the centuries. It could be a thriller or a life lesson, depending on whether you’re Steven Spielberg, Frank Capra, Audrey Niffenegger or H.G. Wells.

Time. Stopping it. Letting it flow.

At some points in life, we’re in such a rush. We want what comes next. Just like 14-year-olds. As children or teens, we’re looking ahead. Counting down. Or counting up, depending on your point of view. Striving toward the goal of being a grownup. Yearning for what seems so enticing.

Yet ask almost any recent high school grad. Wouldn’t they sometimes prefer to relinquish the pressures and responsibilities piling up on top of them, and just be a kid again? With only a child’s concerns? They’re staring adulthood in the face, feeling it shifting their frame of reference, altering their sense of the value of free time and work time, play and respite, labor and effort, privacy and intimacy and friendship and social liberty versus  commitments to college, jobs, loans, housing, relationships and many other binding connections.

A recent graduate might actually wish to stop the hands on the clock. Or spin them backward, to return to what seemed like simpler times.

If you look backward or forward with too much idealism, it’s basically a “grass is always greener” viewpoint. Every moment, past or future, is layered and complex and special and compromised.

In other instances, we’re wise enough or foolish enough, or at just the right cognitive developmental stage (babies, for instance) to loll around in the moment. Bask in it. Splash in it. Submerge ourselves inside it. Be present, here and now.

So recently, I was tugged into my own past during a lively reminiscence with this same 14-year-old girl about our favorite Disney television comedies. Hannah Montana, to be specific.

I found out, much to my shock, that the television series continued beyond the years I’d watched it. Why was I surprised? But I was. I’d missed some seasons, because we don’t have expanded cable access at home. And I don’t have a reason to watch it anymore.

So where did I originally watch this Disney series? When I spent endless hours at Childrens Hospital with Jessie. That was a surreal slice of life, living inside a climate-controlled atmosphere, unable to feel the touch of wind or sun most of time, shut inside an environment with its own rhythms and traditions and language, unlike anywhere else in the world: time lifted out of any other reality, stretching out from hours and days into months and years.

We spent time meaningfully. We conducted plenty of school work and tutoring, reading and writing. Creative projects with fabric and glue and paper and paints and clay and scissors and every sort of craft material you can imagine. Imaginative therapy with music and play and art and talking and role-playing.

But we also spent recreational time playing competitive video games, board games, reading books or watching hours of movie and television, when Jessie felt especially yucky.

Do I miss living in the hospital? No. Do I wish I could snuggle up next to Jessie in bed, watching her favorite Disney shows … yes.

Though the reality of Jessie’s mortality was always palpable, we couldn’t imagine a time we wouldn’t be able to feel her curl up close, still fitting into our laps at age 9, thin and graceful, long and prickly, moody and sweet. It’s impossible to imagine that you won’t be able to touch, protect, play, argue with and console your child. It’s impossible to imagine the emptiness where arms once encircle, or a weight that won’t press against you any more, or a breath, or a voice, or a giggle, or a brush of her fingers.

We’ll say good-bye again again, in a healthy, natural way when Sarah goes to college in the fall.

But a child’s passing? His or her permanent departure? You can’t imagine that will eventually feel like.

Yet the shadow of it  made us pay attention to the time we had with her, and each other, in the moment. In a sense, it focused us. Acted as a lens, and changed how we viewed and measure time. We tried not to take any of it for granted.

Afterward, time changes again. You must grow familiar with her absence hour by hour, day by day, month by month, year by year. Now we measure time, in part, by what came before. And after. For instance, as my conversation with a 14-year-old revealed, there are  years punctuated by High School Musical and Hannah Montana. And years without.

Some children will achieve those milestones that my friend’s 14-year-old yearns to reach. Others will never get there.

Yesterday during the PMC, I watched the results of time’s progression: its blessings and its losses. Survivors posed for a “Living Proof” photo, and many of them were once toddlers or elementary school students on treatment for cancer. Now they’re teens and young adults riding to support cancer research. Like Sarah, many members of those families grow up to study medicine of some kind. I also sought out and hugged sweaty panting adults riding in memory of their children. Others, whom I don’t know, rode for siblings, spouses, or parents.

Then there’s Hannah Montana-time. I realize that some parents don’t approve of the Disney channel. Or Hannah Montana. Mostly on principle. It represents some frothy, silly values that don’t gibe with feminism, for instance. It’s sort of like letting little kids play with Barbies. It demeans, in a way, a more intellectual and wholesome value system. There’s merit, of course, to that position.

Yet it doesn’t make me feel guilty or apologetic for enjoying Hannah Montana with Jessie.  I have written before about the importance of letting children feel like princesses. Role-playing. Therapeutic play. Externalizing experiences and developing scripts and games and roles around it. The potency of magical thinking and the power of fantasy, dreaming and escaping. (Aside: Hannah Montana was a big hit for little girls of Jessie’s age, in part because they could imagine themselves living a double life as “regular kid” and a “superstar.” The possibility of being either ordinary or fairy-tale … or both at once. And in Jessie’s case, perhaps her wishfulness extended to being healthy, as well as all tossing around all those long blonde tresses and rocking those great wigs and outfits.)

So yes, I appreciate the value of my Hannah Montana-years. But I don’t think I’d turn back time. Nor would I fast-forward it.

Here? Right now? A whole lot of life is happening in our family. Sarah’s last month at home before college. My final few weeks before graduate school. The start of a new season and transformation in our family’s life.

The same is true in most families, for a variety of reasons. Summer versus autumn. Vacation and camps versus school, sports, extracurriculars and work. We’re all in the height of this time of year, but it will come to a close soon enough. We’ll all be in the middle of transitions, and the stress that comes with them.

For now, I’ll just savor right where I am. Sure, maybe I’ll sneak in a new episode of Hannah Montana, in honor of Jessie and childhood and the silly ways we escape difficult realities, and the magic of both childhood and a rich adult fantasy life. (Trust me, hours upon hours of Disney channel didn’t steal Jessie’s ability to use her imagination … or mine.) But mostly I’ll try not to tune out; I’ll pay attention to the experience of my living daughter Sarah, who is letting go of childhood and grabbing onto adulthood, even as I write this journal.

Aug3

Why We Ride

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Something short, for a change, I promise.

Below are the lyrics to a song that I wrote for the Coast of Hope bike ride, but they apply equally to the Pan Mass Challenge bike ride this weekend.  Chris and Sarah will ride as a father-daughter team for the fourth year. We welcome your support for their ride, but also know that many of you actively support other causes that are close to your heart.

Let this song speak to you. It is written for any ride, any journey, regardless of the cause or inspiration. As soon as possible, I’ll share the recorded version with music and vocals by a local high school band called Gnarly Charlie. It’s inspired by the many cyclists in my life, past and present, and there are lots!

WHY WE RIDE
by Gail Doktor © 2012

We ride to feel the rush
And the stirring of the wind
We ride on paths unknown
And roads where we have been

We ride through wild silence
In rugged highs and lows
We ride in dappled sunlight
And where the seawind blows

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

We ride to push each other
Past distance, youth and years
We ride to push ourselves
Beyond all doubt and fears

We ride in celebration
We ride beyond our loss
We ride to honor others
Or to help a greater cause

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

We ride to find a way
To get up when we fall
We ride to finish first
Or to cross the line at all

We ride at softest daybreak
We ride til touch of night
We ride in search of hope
We ride to catch the light

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

Jessie and Sarah on bikes, before cancer.

Jessie and Sarah on bikes after cancer.

Aug3

Inspired by Real People (Defintely Not Saints)

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Chris and Sarah in 2011 PMC.

Bandwagon. Soapbox. Call it what you will, sometimes I journal about things that make me passionate. Issues that prompt me to want to act, to find a way to help and make a difference.

We all have causes. I know this and I honor the responses we have each made to the  challenges that have touched our lives. You have yours. I have mine. We can’t do everything, but we can choose to care and support those efforts that move us. We can donate time, talent or treasure to the causes that speak to us.

Right now you’re reading (again) about one of mine. Today I’m inspired by my family (Chris, Sarah, and Jessie) and other cyclists.

In just my town of Ipswich, 11 athletes will participate in the Pan Mass Challenge (PMC) bike ride this weekend. In total, over 5,500 cyclists will participate. They’ll start from Wellesley and Bourne in Massachusetts. Many will end in Provincetown, although there are several routes; they’ll ride between 25-110 miles over one day and 153-190 miles over two days. They come from 36 states and eight countries. There’s approximately one volunteer working to support every two riders.  The youngest riders are 13 and the eldest is 88.

The PMC is the single largest athletic fundraising event in the nation. Last year, about 230,000 individual contributions were made to support these cyclists. This year’s goal? Raise $36 million for the Dana Farber’s Jimmy Fund. This event also provides almost two-thirds of Dana Farber’s annual revenue to support groundbreaking cancer research; 100% of tax-deductible contributions go toward this effort.

As I’ve mentioned before, the research at Dana Farber is revolutionary. There are a handful of institutions around the world (most of them private and supported by fundraising initiatives such as this one) that pioneer most of the cancer knowledge base and treatment protocols used in the world today. Dana Farber is one of these leaders, and their research and treatment methods set the gold-standard of practice used in clinics and hospitals around the globe.

Their teams and their knowledge sustained our daughter and sister Jessie for six years while she lived with leukemia (the best-of-the-best kind of leukemia, if you have to get it, as we were once told). Statistically, Jessie had all the best chances to go through the traditional, effective 2-year protocol and come out a survivor. These days, about 87% of all children treated for this type of leukemia will be long-term survivors. (Even 30 years ago, that number was much lower, so Dana Farber has made tremendous improvements in survival rates.)

Yet almost from the start, Jessie was one of the kids on the rare side of the experience; she was constantly beset with infectious challenges. She almost died on day 10 after diagnosis, over a span of eight hours, as her body shut down, not from cancer alone, but from the infection that had set in. Her oncology team saved her then, by identifying the bacterial cause and treating her aggressively with the best pairing of antibiotics to stop its progression. She endured numerous complications from that interlude, had parts of her body surgically removed and altered as a result, but she lived. There were many more bouts of infections, not all of them so dangerous.

When she relapsed the first time, and we couldn’t identify a close genetic match for a donor for a bone marrow transplant (another statistical surprise for all of us), Dana Farber used an alternative protocol, much more aggressive, that lasted another two years. After she relapsed a second time, Dana Farber recommended another option for transplant; we used stem cells donated anonymously by parents from their newborn’s umbilical cord. The transplant itself was successful; Jessie’s body populated with the new healthy cells of her donor … her blood type and cellular footprint changed. Sadly, aggressive infectious complications combined with a much-compromised immune system ultimately challenged her body too much, and she died 101 days after transplant. Six years after being diagnosed with leukemia.

Age nine.

These bare paragraphs don’t begin to articulate the depth of our family’s journey. They’re just an outline of an illness, and don’t tell you about  Jessie herself. All her passions: theater, swimming, dance, karate, bike-riding, dog-care, kindergarten-first-second-and-third grade, books, card games, soccer, drawing, conversations, friends, and family. She practiced how to ride a two-wheeler, but still used training wheels. She earned an orange belt in karate. She began to read on her own just weeks before she died. She had a crush on a boy in her grade. She dressed in black biker boots and red sparkly Oz shoes. She wore flowing princess gowns, bald or not. She went on father-daughter dates with dad. With her sister Sarah, she ran the Rotary 5K Kids Course. She put up mom’s hair in crazy do’s. She earned a soccer team medal. For one birthday, she raised money and supplies for the local animal shelter. In school, she led an act of social justice in the cafeteria to prevent ostracizing of another child. She performed in a community theatrical production while on treatment. She also traveled to England while on treatment. She savored Zumi’s chai tea, black olives, sushi, spaghetti with “sprinkle cheese” and sauce on the side, chicken and lo mein noodles, pancakes with syrup, and mint-chocolate chip ice cream. She went to the top of a ski slope, rode on skimobiles and jetskis (go fast). She also had temper tantrums, threw things, swore, yelled, drew in permanent marker on furniture, hid with the dog when we looked for her, liked to win even if it required inventing new rules for the game, preferred to be the boss in most situations, preferred the limelight and the liberty of choreographing her own dances or writing her own songs, without practicing enough to know the basic steps or musical chords, teased her sister relentlessly, and sometimes “hated us.”

Let me be clear. She was a little girl, compromised by a mortal illness, but living life as boldly as possible, despite that challenge. She wasn’t a saint, an angel or a martyr. She was “just Jessie,” but that means a whole lot, if you knew her.

Most of what Jessie accomplished, she did while on treatment. Two-thirds of her life was lived on treatment. Her lifespan was meaningful and vibrant, in great part because Dana Farber’s teams found ways to keep the cancer in abeyance and also to balance out quality of life with effective treatment. Nothing stopped her. And she changed hundreds, possibly thousands, of lives, simply by “living large” despite leukemia.

Anything I say cannot fully describe our family over those years. We have changed markedly from the family who first started this journey almost eleven years ago.

Sarah grew up from a naive second-grader into a middle-schooler who’d seen almost every difficult side of human existence, even before lost her sister. She stopped being the little girl who imagined she was a horse or a puppy and grew into a soccer player, on-again/off-again theatrical participant, saxophonist, committed dancer (modern, jazz/hip-hop, ballet), Honors student and gifted singer (solo and chorus). She helped to shape our family’s foundation, Bright Happy Power, and its work at Childrens Hospital with young cancer patients. She volunteered for InterAct (high school Rotary service club) and loved the mission trips with First Church’s youth group; that’s how she connected hands-on with spirituality. She is determined to help teens in abusive dating relationships or living with other traumas. And about becoming a pediatric oncology nurse. Her life grew more, not less, complex after living through Jessie’s cancer experience.

Chris? Became a partner in his architecture firm during the years of Jessie’s original diagnosis. During the most demanding parts of Jessie’s treatment, he was Sarah’s primary caregiver (took her to school every day, and was home every night to give her dinner, do homework and  put her to bed), yet also managed to visit the hospital a few hours every day or so, and take the weekend hospital shifts, while working fulltime. He joined and remains active in the Rotary Club, a service organization that works locally, nationally and internationally on health and education issues. He’s also become an avid cyclist and serves as a youth group leader and Deacon in our church. The only thing more important than these causes? His family: we have always come first. He will set aside any other commitment to be available when he is needed; that has never changed.

These sketches make both of my daughters (and my spouse) sound all glowing and goody-two-shoes, and anyone who has known them, realizes they are each real people and far from perfect. I have certainly journaled and complained (sometimes in very gentle, politically-correct terms) about the less-than-picturesque moments inside our family. Like all of us, my family members (living and departed) are each complex, imperfect and vitally intricate in character: gifted, troubled, challenged, determined, intelligent, cranky, beautiful (okay, handsome for Chris), moody, selfish, generous, always changing and growing.

My narrations cannot really depict the many Dana Farber and Childrens Hospital care providers who made Jessie’s life so rich, because she spent so much in their care. Many of them remain close friends and are still part of our lives. We had primary teams that followed Jessie for six years. Many people  knew her from her frequent visits to their stations or services in the hospital or clinic. And some people we met just a few times, or never saw at all, although they helped us. Nurses, doctors, surgeons, oncologists, geneticists, transplant specialists, pain management specialists, infectious disease specialists, GI specialists, lung and cardiac specialists, nutrition specialists, eye doctors, dentists, clinical assistants, nursing assistants, technicians, respiratory therapists, radiologists, radiology oncologists, lab technicians, pharmacists, anesthesiologists, therapists, counselors, playroom specialists, resource room specialists, medical clown units, music therapists, art therapists, volunteers, and even a visiting dog! Can you imagine how many people were involved in her life and her care?!

Sarah and Jessie in 2007.

Surely you can understand why my husband Chris and daughter Sarah will ride this weekend. We didn’t have a happy ending, but we had a special, memorable life together. Cancer didn’t define us, though it certainly shaped much of our life as a family.

We want even more for other children, other families. We want happy endings for everyone. Actually, we’d like empty oncology units and transplant rooms and eventually we’d like to put those units of the hospital out of business, because everyone is cured, and cancer is an archaic fact.

Although Dana Farber and other research organizations have improved the odds for many children and adults, we’re not done yet. Not even close. All of us know, or will know, someone affected by cancer. It might be in our own bodies, or diagnosed within our immediate family or a close friend or colleague. It will touch your life, if it hasn’t already.

Our goal, for now, is to work toward happier endings. To tell anecdotes with more satisfying results and even greater chances of long-term remission and healthy lifespans. We have come a long way. 50 years ago, leukemia was a death sentence for virtually all children. Now their chances are amazing. The same is true for many other pediatric diagnoses, though not all forms of cancer have such good outcomes.

Regardless of how optimistic the statistics may be, it’s all or nothing when it’s a single life. Sure, the chances of survival are about over 80%. But you can’t be 85% cured. In the end, you have it or your don’t. You stay in remission, or you don’t. It’s 0% or 100%. We want 100% for everyone.

Eventually, you will be able to be vaccinated to prevent some forms of cancer. Or there will be a genetically-tailored response to your specific cancer, that will target only the bad cells and not harm the remainder of your body on a cellular level, as it arrests and eliminates the cancer. It’s begun already.

For more facts and figures, I offer you these resources:

Our town’s local weekly newspaper, the Ipswich Chronicle, interviewed our PMC participants. Movingly, they asked the question, “In one word, what emotion best captures your experience in the Pan Mass Challenge?”

The answers in our town were these:

  • Chris Doktor: Gratitude. I continue to be grateful for that I can ride in memory of my 9-year-old daughter Jessie and do so with my surviving daughter Sarah. I’m grateful that I can share this experience with her for the fourth year. I am also grateful Dana Farber kept Jessie aliveby keeping her cancer in check for six years. I am grateful research continues to expore answers to this dilemma we call cancer.
  • Bill Gram: Faith.
  • Bob Caruso: Inspiring.
  • Sarah Doktor: Challenging.
  • Diana Lannon: It’s difficult to distill down to one word what emotion best captures my experience in the Pan Mass Challenge. I actually tjought about I on my ride today. I would say the words are gratitude and love.
  • Paul Slack: Sorry but I have three – love, sadness and hope.
  • Logan: Transformational.

Here’s a link to learn more about or support Chris  and Sarah  or Ipswich riders.

Me? I’ll be there at water stops and the finish line with camera, extra water, emergency gear, and cow bells. Clang-clang! Someone has to be the crowd along the sidelines for this event. When Chris was asked by the Ipswich Chronicle reporter about his favorite part of the ride? He answered, “Seeing all the people along the route – waving, offering water, holding signs of thanks and encouragement, reaching out to touch a hand … as well as arriving at the first water stop — all the excitement and enthusiasm of the volunteers is inspiring!”

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.