Friday - September 04, 2009
Endings and Beginnings - August 2009
August started with a series of steep hills and a long push to a special finish line: Sarah and Chris participated in the Pan Mass Challenge as a father-daughter team. It's a cycling event that raises funds for cancer research at Dana Farber (where Jessie was a patient for 6 years). It is Chris's fourth PMC, and Sarah's first PMC. Other families and friends from Ipswich also rode as parent-child teams. Congratulations to Bright Happy Power riders: Chandler, Linda, Mark and Sidney, Matt, Erica and Luke, and the many other Ipswich cyclists who also rode to help support cancer research.
We see other cancer families along the PMC route...at its beginning and end, also riding in memory of their children. We ride...in memory of those who died along the way, and in celebration of those who survive. At the finish line, mommy and friends cheer and holler, and snap team photos.
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August started with a series of steep hills and a long push to a special finish line: Sarah and Chris participated in the Pan Mass Challenge as a father-daughter team. It's a cycling event that raises funds for cancer research at Dana Farber (where Jessie was a patient for 6 years). It is Chris's fourth PMC, and Sarah's first PMC. Other families and friends from Ipswich also rode as parent-child teams. Congratulations to Bright Happy Power riders: Chandler, Linda, Mark and Sidney, Matt, Erica and Luke, and the many other Ipswich cyclists who also rode to help support cancer research.
We see other cancer families along the PMC route...at its beginning and end, also riding in memory of their children. We ride...in memory of those who died along the way, and in celebration of those who survive. At the finish line, mommy and friends cheer and holler, and snap team photos.
August also includes visits with family in New Jersey and Ohio: cousins, aunts, uncles and grandparents. Those special bonds are strengthened by extended time walking, talking, swimming, playing games and sharing meals. Life moves along for everyone, and other family members face extreme challenges in their own lives: transformative surgeries, breast cancer treatment, recovery from addictions, rebuilding sober lives, living with acute and chronic illnesses such as diabetes and aggressive cardiac disease, financial and career struggles, care-giving for very young and very old family members, and just the day to day balancing-act of raising families...we hold our loved ones up to the light.
Summer has worked its transformation. We're more tan. Easier in our bodies and more comfortable with the liberties of sunshine and heat: exposed toes in flip-flops and sandals, bare arms in short sleeves or tank tops, and vulnerable knees and not-so-tan skinny legs in shorts.
We're changed. Impatient with rain and overcast skies. Our relationships to our surroundings are more open: windows and doors are flung wide so the world seeps in and our lives peep out. We step outdoors easily, and bring layers and umbrellas with us, but don't usually need them. We stay outside whenever we can, as long as we can. We peel off what's not needed, and get closer to the grit of sand and the sting of salty ocean and the hot kiss of the sunlight. We risk mosquito bites for a few more balmy moments outside.
We're active, but not quite so disciplined about schedules. We're spoiled by hand-picked vegetables from Appleton and local farmer's markets, and fish fresh from Gloucester's fleet, and outdoor meals. Storms have blown through, but we've totaled plenty of good days for biking, grilling, picnicking, kayaking, beaching (is that a verb?), or dancing at twilit concerts at Castle Hill (with some twilit mosquito slaps thrown in).
Like the mercurial summer weather, hot and cicada-buzzed one moment, stormy and wind-whipped the next, our family is driven hard by changes. Relationships are fraught with tension, and then periods of calm and good humor. These days, family communication isn't always easy or pretty. Sometimes it's totally silent, as we withdraw into our private spaces. Sometimes it's loud and angry, filled with slammed doors and hurt feelings, as we all try to fit together and figure out our new roles: daughter growing into a young woman and parents of an almost-adult. Sometimes, for a small space, it's laughing and reflective, confident and loving. But we DO talk and share ourselves with each other. We're not always at our best. We're real. We're imperfect. But we're present for each other...as best we know how. Occasionally, we get it right, and we hold tight to those moments, because they seem rare and hard to earn.
We're all growing up together...this family of three, and one who is among us, but not here to hold our hands or add her voice to the mix.
And, oh, as summer winds down, we're skittish about giving it all up: our sense of freedom, our periods of forgetfulness. Like most seasons, August comes with endings and beginnings. School starts tomorrow. Busy schedules commence, early mornings resume, and cool weather nips at our heels.
Backpacks come out. We fill them with the promise of unlined pages and sharpened pencils, fresh pens and charged calculator batteries. We lay out new jeans and shoes, sweatshirts and notebooks. Forms are filled out, medical exams completed, everything in seeming order.
Underneath the newness that comes with a schoolyear, we have our summer tans and mosquito bites, our late-night habits and hard-to-wake-up blues. We're not quite ready. Ever. For this change.
For any change. It comes along, whether we're prepared are not. And we find our way.
In our family, Sarah's growing up and away. She'll be a sophomore at Ipswich High School. Independent. Determined to make her own choices and be herself. Setting her own priorities. Discovering herself and her place in the world. Balancing the need to just 'be' a teen for a little while, with the richness of friends and loves, after-school pastimes and academic challenges, and then to look ahead to her future as an adult, and take steps that lead her toward long-term goals: college and career.
And as other children prep for the return through school doors, we ache with emptiness, too. For all of us...Jessie will always be 9 years old. She cannot share the adventures of her classmates as they move up to middle school, or begin their last year at Winthrop Elementary. We catch our breath at the rush of first-day-back-to-school memories...kerchiefs on her head, tights on her legs, grin on her face, tugging at a grown-up hand and then pulling loose, walking ahead, as she traveled eagerly to her first day in class. Wanting to be among her friends, at her desk, with her teachers.
Change isn't easy. It hurts. It aches. It stretches us. It pulls us out of old familiar shapes and ways, into new forms and connections. Ouch. Oh.
As September slips closer, we are carrying crisp summer tan lines, outdoor scuff marks, busy scrapes and old-time scars of lives that have been exposed and vulnerable. Summer months. Cancer years. Those times we have lived openly, wholly, with purpose and without caution, because we could and must and dared.
The tan lines will fade, the bruises and scabs will heal as the autumn comes. But we'll rub them thoughtfully, and purse our lips, remembering.
And we'll earn new ones: marks and scars. Because we go on living. We'll continue to be too loud when we should be quiet, speak to fill the silence when we should simply wait and listen, stand with crossed arms when we should reach out with an embrace, stay up too late when we should rest in readiness for whatever comes next, or push too hard as we try to stay busy and involved, and then need to pause and catch our breath. We'll make mistakes. But we'll learn. We'll get it wrong. And sometimes...we'll get it right. And all of it...all of it is living.
The journey continues.
Wednesday - August 19, 2009
Enough? - July 2009
Which words are enough? A challenge arises. What words do you write down, or say, to capture the meaning of a life...brief or long?
Weeks ago, Gail ("mommy" to Jessie and "mom" to Jessie) attended a memorial service for all of the children who died at Childrens Hospital Boston last year. As much as these caregivers strive to save every child, and go to extraordinary lengths to preserve life, they cannot rescue everyone. Some conditions are too dire. Death is part of the reality at Childrens Hospital and Dana Farber's clinic. Life is bursting at the seams there, and cures and miracles and everyday healing occur almost all of the time, but death is also part of the experience.
Of course we know this...Jessie was one of the ones they tried to save, using all the tests and knowledge and procedures and experts and treatments available...but couldn't. In the end, although she challenged them, and made all of us believe she could come out the other side of her disease, she didn't come out of it as we hoped she would. Alive. Here. Among us.
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Which words are enough? A challenge arises. What words do you write down, or say, to capture the meaning of a life...brief or long?
Weeks ago, Gail ("mommy" to Jessie and "mom" to Jessie) attended a memorial service for all of the children who died at Childrens Hospital Boston last year. As much as these caregivers strive to save every child, and go to extraordinary lengths to preserve life, they cannot rescue everyone. Some conditions are too dire. Death is part of the reality at Childrens Hospital and Dana Farber's clinic. Life is bursting at the seams there, and cures and miracles and everyday healing occur almost all of the time, but death is also part of the experience.
Of course we know this...Jessie was one of the ones they tried to save, using all the tests and knowledge and procedures and experts and treatments available...but couldn't. In the end, although she challenged them, and made all of us believe she could come out the other side of her disease, she didn't come out of it as we hoped she would. Alive. Here. Among us.
Whatever you might believe about what comes next, her journey passed into some place we cannot follow (yet). So we're left behind -- or moving on --grappling with the gaping hole of her absence. And the almost-ness of how close she feels, just beyond touch or sight or hearing, intertwined in how we continue to live.
Back to the 'A Time to Remember' Service: Part of the annual service is a series of readings and songs, read aloud or performed by the doctors and nurses at Childrens Hospital Boston. And occasionally, by parents. Gail read a poem, chosen by a taskforce of planners, that was written by another grieving mother. Gail, and a row of cancer parents, sat together, held hands, shared tissues, wept through songs, and chuckled at some of the children's literature read aloud, because children's books so aptly capture the vision, hope and resilience of children...even those who have moved beyond us.
And a recurring question arises now in Gail's mind. What lyrics or words will they choose for next year's service? What can possibly be universal enough, spiritual enough, playful enough, meaningful enough, to be included? What can sum up a whole life, and give it back to the families who gather to mourn? What can prompt them to laughter, provoke them to tears, and help them find a place and expression for their feelings and their loss and their lives stretching out ahead, full of promise and busy-ness and growth, but without a beloved child included in that future?
What words are enough? What song is right? How do they choose?
Gail listens to pop songs, skims poems, thinks twice about hymns and prayers, trying to find selections that would be worth sharing with the staff who plans and prepares this annual service. What words are enough?
None are enough. But we make do. Because we must. Because we can. Because we need to.
Actions speak louder. Sometimes words cannot fill the space or heal the heart that needs to find a way to live with loss. Sometimes actions are essential.
Actions. Gestures. Physical response. Inhabiting our world real-time and truly connecting with something bigger than ourselves, by immersing ourselves inside it. Reaching out in service, as we do through the youth group's activities (Sarah went to Philadelphia with our church for a week of service in soup kitchens, literacy programs, daycamps and community gardens). Or as we do through Bright Happy Power's projects that support children living with life-threatening or catastrophic challenges: North Shore peer groups, childlife projects and events at hospitals and clinics, or supplies for international medical programs.
Last month, cyclists rode on the North Shore for Bright Happy Power's fundraising ride. In a few more days, at the beginning of August, Bright Happy Power sends a cycling team to the Pan Mass Challenge to ride in memory of Jessie and others living with cancer. To make a difference. To raise funds for Dana Farber's Jimmy Fund for cancer research.
Chris and Sarah, father and daughter, are riding together in the PMC for the first time! One daughter cannot be there. One will cycle alongside her dad.
Several Ipswich 'Bright Happy Power' families are riding. Generations are participating together. Making a difference. Doing something that counts...a measurable, quantifiable, immediate, visceral response that changes the world and saves lives and...and kindles hope...and perhaps healing for bereaved riders, too.
Miles. Spokes flashing. Wheels turning. Sweat. Breath. Thirst. Hunger. Exhaustion. Euphoria. Feeling it. Living it. Being part of it.
Sometimes we must DO something, not say something. Sometimes, to live with this grief and to keep going...to make something more of our mortality and human experience...we must just...LIVE. Ride. Move. Keep going. Away from some things. Toward others.
What is the purpose? The ride itself. It's action. It's life. In honor of those who cannot. In celebration of those who can.
The journey continues.
Monday - August 10, 2009
Unspeakable - June 2009
It was beautiful and inspiring, as we watched 15-year-old Sarah complete her freshman high school year with High Honors and Student Achievement awards and perform in end-of-school concerts. Rewarding, as we witnessed our Rotary exchange student Tina Danila go through commencement at Ipswich High School and say good-bye to 10 enriching months of life in America.
At the same time, this season was difficult, as we shared a week of 'Bright Happy Power' community service projects carried out by Jessie's classmates at Winthrop Elementary, and attended some of the 'graduation' celebrations that her 5th grade peers enjoyed as they transition into middle school. Her classmates included Jessie on the class t-shirt and yearbook. We won't try to describe how much we loved being among her classmates and watching with pride as they grow up and bring Jessie with them in memory and deed, or tell you how every breath hurt at the same time, because Jessie wasn't among them.
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It was beautiful and inspiring, as we watched 15-year-old Sarah complete her freshman high school year with High Honors and Student Achievement awards and perform in end-of-school concerts. Rewarding, as we witnessed our Rotary exchange student Tina Danila go through commencement at Ipswich High School and say good-bye to 10 enriching months of life in America.
At the same time, this season was difficult, as we shared a week of 'Bright Happy Power' community service projects carried out by Jessie's classmates at Winthrop Elementary, and attended some of the 'graduation' celebrations that her 5th grade peers enjoyed as they transition into middle school. Her classmates included Jessie on the class t-shirt and yearbook. We won't try to describe how much we loved being among her classmates and watching with pride as they grow up and bring Jessie with them in memory and deed, or tell you how every breath hurt at the same time, because Jessie wasn't among them.
June - for all of us in Massachusetts -- was full of rain and clouds. Soggy and dark. Not the summer of our hopes and promises. Not the healing, benevolent season of heat and sunshine that we wished for. Gardens and farms were challenged. Weeds flourished, but other crops faltered. Rivers rose high again. People were anxious to get outside and feel some sunshine.
And what was the lesson for New Englanders? The same one we have learned every year. Not so different from what we have discovered as we lived with cancer, and now live with the grief of Jessie's passing, and yet find daily happiness in our lives together as a family, and as members of this commuity.
Life cannot stop, just because of bad weather and gloomy forecasts. If we wait for the perfect climate or temperature, we'll wait forever, and nothing will get done. Life will roll along, and we'll still be waiting. Life is what happens in the storms and the downpours, in the clement and inclement, in the humid sunny hours and the cold chilly ones, too. It's what happens all the time, regardless of the forecast.
And so...if we wait for perfect weather and timing, we'll just wait. Instead, we put on layers, bring the rain gear, and hope for some sunshine. We go. We do. We have to make plans and keep going, rain or shine. Because life is now. Here.
In June, we held a bike ride called Coast of Hope. Cyclists rode courses that ranged in distance from 12 to 75 miles. 68 people rode. 46 registered in advance, 22 signed up on the day of the ride. The youngest rider was 10 years old, a close childhood friend of Jessie's. Our 15-year-old daughter Sarah volunteered all day at the ride, since she was just out of the cast for her broken ankle (she's training now to ride in the August PMC with her dad, in memory of her little sister Jessie). We raised over $10,500 for programs that will help children and families living with childhood cancer, life-threatening illnesses or other catastrophic challenges.
Planning for the ride, we were asked if we'd postpone it, due to rain? We paused. Considered. And said, "We'll ride, rain or shine." There's no chance of re-organizing and regaining momentum. "We'll just go for it."
So we planned for rain...just in case. But we believed in the possibility of sunshine. And sure enough, the sun came out. More people signed up. And we raised funds. And we had a great time. And even if it had rained...we would have ridden. And raised funds. And had a great time.
Life didn't stop in 2001 because Jessie was diagnosed with cancer. It didn't stop when she almost died in the first 10 days of treatment. Or in the first two years of treatment, or with every new infection, or the surgeries that altered her body, or the radiation or the chemo. Life didn't stop...or suddenly resume...when her hair grew back and she got strong again and returned to school at Winthrop. It didn't pause and fast-forward when treatment ended. Or rewind or stop or pause when she relapsed in 2005. Or again in 2007. Life continued, as we traveled, as she learned to read, as she played soccer and took dance and swim lessons and earned a purple belt in karate and ran lemonade stands and attended her 'Big 2-3'class for as long as possible. Life didn't end when she entered transplant, or ICU.
Jessie's mortal life ended, yes, when her lungs and heart couldn't beat anymore. And some part of each of us was changed and hurt...forever...by her passage.
At the same time, we all took deep breaths, and held them, and pay more attention...now...because we had the chance to know Jessie.
Our lives continue. And we are capable of deep happiness. And commitment to projects and causes beyond our own lives. And loving each other. But also of getting annoyed by small things, and forgetting what matters most. Or being too tired or sad or stressed or overwhelmed to be 'present' and engaged by those around us. On the other hand, we're also capable of sitting down at the dinner table together, saying grace, listening to dad's motivational quote of the day, answering his daily question about "What's one new thing you learned today?" and talking to each other.
Rain or shine, grief or joy, we connect and touch each other. We don't always do it well or perfectly. And okay, sometimes we resort to emails or text messages, or shouting through closed doors or up the stairs, or notes jotted on index cards and napkins...but we find each other. And we're all here. Together. Finding our way. Sometimes gracefully. Sometimes messily.
Rain or shine: this is life. This is what we have been given. And we're bound to remember...not everyone gets this chance...so let's use it as well as we can. Don't wait for the good forecast...you may not get it. Life is what happens in the deep hours of the night and the waking hours of the day...regardless of the weather.
This June, it rained a lot. And yet...we lived. Imperfectly. Messily. Happily. Unhappily. Grumpily. Busily. Ambitiously. Dreamily. Hopefully.
The journey continues.
