Category Archives: Sisters and Brothers

Dec17

Comings and Goings: Light and Silence

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Last night, Chris and I stood at the international exit gate of Boston Logan’s Terminal E and awaited Sarah’s return from a semester of college abroad. She came home from Greece with lots of stories and a great craving for iced coffee! We welcomed her home. It’s our first Christmas re-assembling ourselves as a family that must travel to find each other. Sarah is an adult off and about in the wide world, and Chris and I are both living in Ipswich … but always busy somewhere else … so our family rhythms are now timed, in some ways, to her comings and goings.

And Jessie … she is all around us. But there will not be a reunion here. She will not, on this earth, flash her passport at customs, wink at security, and waltz in glittery red shoes through an airport gate, back to us.

There are many sorts of comings and goings.

One week ago, we climbed the swaybacked granite stairs to the top of hill and visited Jessie’s grave. As I’ve mentioned before, it’s a small pink stone set flush with the grass that spreads itself between the roots of two towering maples. It was an international night sponsored by Compassionate Friends, an organization for bereaved parents, to light candles for departed children everywhere. Many communities hosted vigils. Chris and I sat together. Laid on a blanket, staring up at the starry sky clasped between the crooked fingers of the naked winter trees. Lit candles. Put a tiny fir tree by the headstone, and hung one crane on it. Said a prayer full of thorns and hurt and sharp-edge stones and starry nights and hope. There

jessie_headstone

One week later, it seems as if we should hold that vigil again. In fact, its been held over and over, across the country and many other places, to remember the families in Connecticut. We’ve made circles, said prayers, wept, wondered, argued, shouted. I would also say, lighting a candle has its place.

I just don’t have any soft and gentle words for this. I don’t want to light more candles … for little ones … ever, for any reason. Not because of disease. Or starvation. Or natural disaster. Or violence. Not for any cause.

On the other hand, when Toni Morrison spoke at Harvard a few weeks ago, she reminded us about the silence of the Amish community after their own trauma. How they would not speak to the media. Instead their beliefs were enacted through deeds. They attended the funeral of the one who took away the lives of their beloved children. They comforted his widow and children. They raised funds for his family. They razed the schoolhouse full of unspeakable memories, and built a new one. They lived out their compassion and forgiveness, in the midst of their own great sorrow.

I’m not saying that’s the solution for every loss. Just that it is another path, another way, another example among many responses to devastating circumstances.

This weekend, I don’t have words at all. And maybe that’s best. Oh, so many voices already speak into this space, this trauma, this irrevocable tragedy.

And some are comforting. My colleagues found the inside themselves the prayers we all needed to acknowledge the darkness we felt and a reminder to reach, like the winter trees, for the starry night, the promised light.

Yet for me? Though my family knows much about loss, it is not this kind.

So rather than fill the air with more words, I will listen. Listen to silence. Listen to sorrow. Listen to songs. Listen to stories. Listen.

And yes, I will light a candle. It is one act I can offer, when I feel powerless, for my own family and so many others.

Sep11

Be an Instrument of Peace

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I cannot pretend to have wisdom on a day like 9/11. Nor to truly understand the depth of its impact. Simply to acknowledge that it shook not just those who were hurt or lost, and their families and communities, but all of us. It changed our world view. It rippled out in layers of distrust and violence, but also in ever-growing rings of hope and resilience.

Just yesterday a friend and I remembered being together on the day that the Twin Towers came down. We’ll always remember where we were that day. Wanting to scoop up our children and hold them close. Not sure if the world was ending.

We recalled worrying for a friend who traveled internationally on American Airlines flights to London. Was she alive? As it turned out, she was okay, but she attended the funerals of several colleagues — crew members — for weeks afterward.

We remembered the arrival of a little boy from that devastated Manhattan neighborhood to our daughters’ school in New England. His home was not habitable; his school was closed.

This past weekend, our neighboring town of Rowley dedicated a memorial to 3 townspeople who were on one of the flights. They used as their monument, a piece of steel from the site of the crash. It was moving, yet can never express all that was taken away on that day.

In my father-in-law’s town in New Jersey, where the ferry leaves every morning for Manhattan, the memorial is larger. Too many folk were connected from the small seaside town to the large city center; their passengers worked in those buildings, and many never came home.

And finally, our minister Rebecca Pugh Brown uncovered and recounted for us the story of Andrew Rice, and his journey of loss and forgiveness. His brother David was in the second tower. Andrew was a journalist at the time, and much of the rhetoric after the day of 9/11 didn’t fit his view of the world. He was angry, but he sought some sort of resolution or healing step. His story is shared on the site of The Forgiveness Project.

Then, as David Rice’s summary tells us, “Later, a group called Murder Victims Families for Reconciliation were contacted by the mother of the alleged 20th hijacker, Zacharias Moussaoui, who has been held in solitary confinement in Northern Virginia since September 11. She had a unique request. She wanted to meet some of the families of the victims and ask for their forgiveness.”

We were nervous; scared of our Government finding out, and scared it would be just too upsetting. But finally a small group of us agreed to meet Madame al-Wafi in New York City in November 2002. As we waited in a private university building, a mother whose son was killed in the World Trade Centre went down the hall to meet her. We heard footsteps, then silence. Then we heard this sobbing. Finally they both came into the room, both mothers with their arms around each other. By now we were all crying. Madame al-Wafi reminded me a lot of my own mother, who had cried so much after David died. She spent three hours with us and told us how the extremist group had given her mentally ill son a purpose in life.

One day I’d like to meet Zacharias Moussaoui. I’d like to say to him, ‘you can hate me and my brother as much as you like, but I want you to know that I loved your mother and I comforted her when she was crying’.”

Today I’ll sit in a class at Harvard University called “Understanding Islam.” There is so much education, awareness and bridge-building to be done.

I want to work side by side with Muslim brothers and sisters, to create a world that has space and hope for all of us. That’s part of my work and purpose by attending Harvard. That’s why practitioners of Islam are studying alongside me, for the same reasons.

Today is a tense, emotional, difficult day. It’s easy to step awry.

Instead, breathe. Listen. Pray.

Pay attention to what you’re feeling. Honor it. Acknowledge it. Then let it wash through you. Let it arrive. Let it go. As much as that is possible for you.

Be an instrument of peace today. For yourself. For others. For our world.

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.)

Aug9

Self Care: Checklist from the Past (Still Works)

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Self care in difficult places. How do you do it?

Back when we spent extended periods of time with Jessie at Childrens Hospital Boston, it was easy to let go. To make excuses and just overindulge. To say to myself, “You’re under tremendous stress, so don’t worry about what you do to make yourself feel better. Just take the elevator, because time is more important than exercise on the stairs. And the breakfast pastries? Those carbs don’t count right now.”

But those indulgences did count. The cravings, the bad food, the less-than-virtuous habits, the lack of movement … it all added up. And I carried (and still do) the results of that lack of self care even now. I’m still regaining balance.

Now let me clarify, that given the constant crisis in which we often lived, I coped darned well. I only slept a few hours each night, but I was alert and functioning at a very high level. Always “on” …  checking monitors and daily numbers, being Jessie’s companion, working out Jessie’s schedule for the day (coordinating visits with friends for her, organizing therapeutic appointments, negotiating time on/off the IV so she could be more mobile, making a plan with her nurses for any other particularly difficult procedures, scheduling her daily ACE flush, participating in rounds with the oncology and transplant teams … later ICU teams … and any specialists), consulting with a variety of staff members at crazy hours of the day and night, and keeping up with Chris and Sarah either during their visits, calls or remotely (I was still handling Sarah’s schedule and organizing the logistics of her daily life, from a hospital room in Boston, through a network of phone calls among friends). We did a lot from a small room in Boston. But only because we had so many people willing to help. Chris and I were a team. And our community was an extended web of compassionate hearts and hands, willing to make almost anything possible.

Taking care of yourself and each other? Could depend on your definition, I suppose. In a way, when your child is diagnosed with a mortal illness, your sense of power, control and competence is already being put to the test. You can’t make her safe anymore. The disease wasn’t cause by your lack of vigilance, and it won’t be fixed because you pay extra attention now. And yet … you have been dealt a severe blow to your own self-image as a parent and member of a family.

Realistically, although only one body is affected, this kind of trauma happens to everyone. It ripples out and touches, affects, changes all family members … and also friends, peers, community. In my family? I think we all feel like we had cancer, though only Jessie truly did. And if she were here, she’d stomp her foot, raise her voice, and be quite clear that it happened to her body, it was her experience, and not mine. Not dad’s. Not Sarah’s. But in many ways … yes, it happened to all of us. Hurt all of us.

Below are some of the ways we managed self-care even in stressful places and times. Many of them would translate well to virtually any experience in life. Admittedly, it’s easier to dole out wisdom than to act on it … I attempted all of these things, but I was better at some than others, as I’ve admitted earlier in this entry. If you find something helpful on this list, that’s great.

  • Walk. Use the stairs. Exercise. The hospital staff used to pass out pedometers, so that parents could measure how many steps they walked. We figured out that several rounds up and down the halls of the hospital, as a parade of patients and parents riding or driving wagons, tricycles, IV poles and plastic cars, totaled a mile or more. (Jane Roper, the mom whose daughter has just completed her first month of treatment for leukemia, made a humorous post about her exercise regimen. It was familiar, I assure you.) Or you could go down to the garden, as Jessie often wanted to do, and run laps. We had a timer and stop watch, because she liked to be clocked for speed. Usually I was timing her, not running, though. Using the stairs? It was an easy way to improve cardiac health. I started, in the last few months of Jessie’s stay, to challenge myself to do this every day. I admit that down was easier than up.
  • Eat healthy foods. Homemade food didn’t really exist at the hospital. There was plenty of cafeteria food, and it was fine, but not home-cooked and not always very appealing … the best, healthiest menu item available was the soup from Au Bon Pain restaurant. Otherwise, we always asked for homemade food in containers … Chris would bring a stack of filled Tupperware for us to put in the unit’s refrigerator, slices of all the casseroles and meals that our friends were delivering to the house each week. I tasted a lot of those meals. Now kids on treatment have steroid cravings, or can only eat restricted diets, and sometimes homemade foods won’t work. There were lots of times when we gave up, and let Jessie eat whatever she wanted, but we worked hard to offer healthy alternatives, and not to buy into the “every calorie is a good calorie” mantra we’d been taught early in her treatment. Like us, she had to have healthy eating habits that could translate in and out of the hospital, as much as possible.
  • Say yes. When people offer to help, let them. Be specific and express your needs. It empowers others when they can’t actually do anything about the disease, but you give permission for others to “do something” in other ways. It heals everyone. And lets you focus your limited resources and energies where they’re most needed. We went through this journey, as I mentioned above, in the company of hundreds … possibly thousands … of caring souls, starting with our own extended families and our town of Ipswich. Meals. Pet care. Household chores. Rides. Visits. Errands. Childcare. Yard work. There are always so many big and small ways that others can assist … it takes a village to raise a family living with cancer, you might say.
  • Find a mental escape. A little every day. Late at night, when Jessie finally went to sleep, was the only time my brain could have “down time,” and I craved that almost more than sleep. I needed to go on a mental vacation. So I’d put on earphones (one side only, so I could listen for Jessie and the monitors, though) and if I was too tired to read a book, I’d watch movies … all of the movies made from Jane Austen’s novels or the Bronte sisters’ works … and the entire JRR Tolkien Lord of the Rings series. Fantasy. Period pieces. Stories so removed from the room where we lived, with beeps and clicks and small flashing red lights and digital numbers counting down, that I was transported away, could escape and unwind a little bit.
  • Swap shifts. Take a break. Most families had some variation on this routine; parents would trade roles. One would spend time at home, the other in the hospital, with brief overlapping periods. Some would do a night-day rotation. In our family, I’d do the week shift, Chris would come in and handle the weekend, and I’d go home, spend some time with Sarah, and get the only real sleep of the week. Chris would take a fresh look at the situation in the hospital, and problem-solve whatever he could.
  • Sleep. When you can, every day. Naps are good. If Jessie slept, sometimes I did, too. I’d start off in Jessie’s bed, until she was deeply asleep, and then I’d move over to the “parent bed” and attempt to sleep more deeply.
  • Counseling. Work on what’s happening. We had a therapeutic relationship counselors. We spoke (or in Jessie’s case, played) with the counselor as often as possible. We also did a lot of role-playing with dolls and stuffed animals. Writing stories or creative art projects.
  • Social time. We made play dates or therapeutic sessions for Jessie. Adult friends came down to visit, too. (And the staff were often friends, so you could have plenty of bonding time with them, too. Many of the nurses and a few of the doctors remain good friends even now; they allowed themselves to be more than just medical caregivers. If you think about it, we basically lived with them for extended periods of time.)
  • Shower. It helped to scrub away one day’s stress, stand for two minutes under the pounding hot shower, and then feel slightly more alert and a little more pulled together.
  • Clean clothes. Chris did loads of laundry and brought them in, exchanging dirty for clean garb … it was possible to do laundry in the hospital, but it was another chore and expense that we handled at home instead. And when the new bag of clean clothes arrived, it smelled like our detergent, our house, our …. Our lives. I developed a “hospital uniform” that was layered for temperature changes (we would travel to different areas that were hot or cold), could stand up to messes (blood or puke, for example), remained comfortable (I was often contorted into weird positions, crawling into bed with Jessie, playing games in odd spaces, etc), felt clean and loose (I hate tight constricting clothes) and forgave my lack of grooming, but made me feel presentable when dealing with teams of professionals who can shower and change into cleaned, laundered and pressed outfits with heels or polished leather. I was lucky if I got to brush my teeth. Jessie had a whole different wardrobe. It was mostly pajamas and some street clothes, all marked by her style. Lots of cute slippers or flipflops. Head gear, scarrves and hats. When she had certain kinds of cardiac catheters, we sought halter-style dresses, pjs and tops, because of how we had to maneuver her arms in and out of clothing.
  • Personal grooming. Take a little quiet time. I liked to get away from the hospital room, behind a closed door inside a bathroom to myself for five minutes (on oncology, ICU or transplant, parents shared a few bathrooms, so you couldn’t monopolize it for long). Completed small daily rituals. Brushed my teeth. Shaved armpits. Applied deodorant. Washed my hair if there was time. Changed my socks and undies. Phew.
  • Cry. Mostly in the shower. You can weep in private in a shower. Your child or spouse won’t know. And you have to let it out sometime.
  • Journaling. Wrote a daily blog entry that I would email to Chris, along with photos if I’d taken any, and that he would post for us. It was a joint effort to maintain the journal every day during Jessie’s treatment. Tried to make some meaning of this experience, and also communicate with everyone who cared about what was happening. Other people did it through scrap-booking, or video journals, Youtube posts, or online journals such as caringbridge or carepages, or MySpace or Facebook, or yes, old-fashioned diaries. In all kinds of ways, the experience was recorded. In addition, we kept a running Daytimer schedule appointment book that was passed back and forth, so that when we handed it to each other, we’d recorded such items as what medications had been given, what doctors had visited, Jessie’s vitals, her temps, if she’d eaten or gone to the bathroom, what she’d had been doing (active, tired, playful, cranky), any memorable quotes, and those sorts of details.
  • Communicate. Visits in person. Notes and letters. Pictures. Skyping. Phone calls. Facebook. Staying connected.
  • Photography. An amazing tool for family and the patient, too. The lens can be turned toward the experience itself, or pointed outward, away from the body and self, to whatever else draws the eye. The birds in the garden. Other patients. The hospital environment. Details. Also, we put up the prints of loved ones and home where Jessie could see them and visitors could look at them. They can help with visualization. And remind caregivers that this is a real person, a well-rounded family, and they’re only meeting us in one part of our lives, but through photography they can learn more about their patient as a whole person, with other interests and even appearance (like a kid outside on a soccer field with hair, not just bald in pajamas hooked to an IV pole).
  • Take a walk. We’d negotiate ten minutes to walk outside in the garden. Or while a nurse or therapist kept Jessie company, because she didn’t usually ever want to be alone in her room, even surrounded by staff, I’d make a quick run for supplies (toiletries from pharmacy, snacks from grocery or new titles and games from the book store). Sometimes I’d stand outside the front entrance to Childrens, ignoring the traffic and the pedestrians, and just lift my face to the sky. You don’t know how important it is to feel any kind of weather on your face … rain, sun, wind, snow … until you’re stuck behind a layers of insulated glass in an environmentally-controlled, filtered-air, cycled-water, colored-lights-in-the-ceiling unit … where nothing is real.
  • Caffeine. I wanted to sip chai latte every day. Some people love Dunkin Donuts for its coffee. I drink tea, so I went to Starbucks, because there wasn’t a Zumi’s in Boston.
  • Creativity. Sing. Dance. Make a video. Express yourself.
  • Pets. Animals are an amazing form of unconditional love and affection, and a safe place to put feelings you don’t share with anyone else. They won’t give away your secrets.
  • Create family time. We’d organize visits for the whole family, so Sarah remained connected, as much as possible, to events in the hospital, and Jessie got family time. We’d eat a meal together downstairs (during the periods when Jessie was allowed off the floor or in our room), play video games or board games, take a nap, watch a movie, read a book … just hang out.
  • Scream. Jessie had to yell in her bed. We worked on ways to handle rage. We’d close the curtain. She had a “monster” pillowcase on which she’d drawn the “mad monster” and the “happy monster”. She’d flip sides, and pound on the pillow until some of the anger dissipated. Or she’d just yell invectives at the top of her lungs. And why not? What was happening wasn’t okay or fair or anything resembling the childhood that any child might hope for. You can call it a “Book of Job” moment if you want. Other cancer parents have told me stories about throwing rocks at the ocean … hurling missiles at the biggest, most impassive element in their worlds … because it was the closest they could come to screaming and hitting at their Creator (or fate, or providence, or karma, or whatever … depending on faiths).
  • Pray. Yes, always. Sometimes the negotiation variety. “If I do this, will you do that?” We’d make lists of what we hoped for, and ask everyone reading the blog to pray for specifics. Good blood counts. Stability. Remission. Healing of infections. And we were sent all kinds of prayers. Stones with words in them. Angels as pins and small objects. Buddhist prayer flags. Quilts. Native American prayer wheel. Tibetan prayer wheel. Cards and mementoes from sacred places known for their healing power. Meditations and mantras. Digital messages with scriptural texts. Visits with our minister Rebecca. Songs. Oh, and all the unspoken prayers that arrived in every bag and box delivered to the hospital … embodied as stuffed animals, books or homemade food.
  • Laugh. We learned early about the power of laughter to release tension and restore balance. Another family from Ipswich, whose daughter was treated for non-Hodgkins Lymphoma, told us right away about a website called squirreltales.com and a list of funny observations called “You Know You’re the Parent of a Kid with Cancer when …”  We posted the lists on our hospital room door, and other pediatric cancer families also read them and guffawed out loud. We all understood the bizarre humor. Meanwhile, Jessie was a big fan of playing jokes and pranks. She had a fart machine. She’d draw fake rashes with washable marker. She’d make squirt guns out of clean syringes and shoot water at her nurses. Oh, the fun.
  • Seek alternate therapies. The staff used to arrange chair massages for parents. Once a week, if you were lucky, a masseuse would come work out the knots of tension, anger and grief in your neck and shoulders. (It might be the kindest and most intimate touch you experienced in place filled with masks, gloves and gowns.) We also had access to reiki, which didn’t require touch, and was safer for patients to use, too. And then there’s simpler therapy, like doing manicures. Believe it or not, that used to be a very helpful pastime for parents and patients alike. Except you have to leave one fingernail unpainted, so they can hook up one of the monitors that clips to your finger and reads vitals through your nail (I think it was O2 saturation, but blessedly, it’s been long enough that I don’t really remember, and I’m not going to research it for this blog). And yoga.
  • Know you’re not alone. It was humbling to realize that we were surrounded by other families also on the same journey. When you look outside your own door, or even peek around the curtain in a shared hospital room, you learn that this story has many variations and many outcomes. And you have a whole lot of companions, people you’d never meet any other way, who share this common experience and can understand it from the inside out, and may even have more wisdom or tips for how to cope. And as mentioned earlier, you also have friends and family participating, as much as possible, in this journey. And staff, who also become like family along the way. You really have a whole lot of support and community available. (I hope others also find this true, anyway.)

Okay, here’s a confession. I also had “drinking” on this list. As in, adult beverages. Margaritas. A beer. Social chances to unwind. But then I decided that was never a self care habit; it was more along the lines of eating too many carbs and making excuses. Not when you’re run down and strung out. So I can’t recommend it as a responsible therapeutic step. Even if it’s soothing.

The truth is, we also cope by indulging. Becoming childlike in our activities. We play video games. Eat sugary or salty foods. Misbehave in many ways. And that’s okay. That’s human, and it’s part of what happens in stressful times. It’s just good to find equilibrium, and use those other resources listed above to maintain some healthy counterbalance in life, and not tip so far over into any unsafe, destructive choices, that you can’t be a responsible, competent caregiver to your family or yourself.

Aug4

Spin

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Here is the other theme song I wrote a fear years ago for our cyclists. Sarah has performed this at the Coast of Hope bike ride a few times.

Our first family PMC, with Jessie as a young pedal partner, pictured with the team riding in her honor.

Again, the song has wider meaning than just one event. To me, it represents any ride or journey, including the one that Chris and Sarah will continue when they ride together tomorrow in the Pan Mass Challenge / PMC. (I’m posting more images from several years of the PMC, so you can see just how young Jessie and Sarah were when all of this activity began, and how mature Sarah is now, as an adult rider celebrating this tradition with her dad. You’ve already seen images from 2010 and 2011 in the past few days.)

None of us can imagine, from start to finish, just where we’ll go along life’s pathways. And most of all, what determines the finish line? There are so many milestones we pass, so many balloon arches underneath which we ride, so many bridges we cross, so many lines we draw and then step over, so many gateways through which we move … we don’t always know what’s around the corner or beyond the next crossing. You may cross one demarcation, but in many ways, the ultimate destination is always just ahead.

Enjoy the ride, enjoy the journey, as much as you can. It’s the passage from one way station to the next, the route from one stopping point to the other, that comprises our life together.

Here’s the song.

Spin
by Gail Doktor © 2009

Hearts cry out as wheels start turnin’
One more ride and one more day
Dare ask questions along this journey
Hope for answers along the way

Sure I’ve been lost and I’ve been broken
Look for hope after living through hell
Had to stop and start all over
Still carry scars from times I fell

      Oh you can’t measure life in speed and distance
      Or starting points and finish lines
      It’s where we go and who rides with us
      Every moment, every mile

What comes next? No way of knowing
Each arrival includes farewell
In our coming is our going
…in between we spin the wheel.

      Oh you can’t measure life in speed and distance
      Or starting points and finish lines
      It’s where we go and who rides with us
      Every moment, every mile

Find the beat
      Moving you onward
Breathe the song
      Of our going
Hear the drumming
      Of our heartbeats
Risk the turning
      Of the wheel

      Oh, you can’t measure life in speed and distance,
      Or starting points and finish lines
      It’s where we go and who rides with us
      Every heartbeat, every hope found
      Every moment, every mile

Chris and Sarah hold up the Bright Happy Power banner during a rainy 2011 PMC.

Jessie and Sarah waiting at family stop in Dighton for our PMC riders.

Our 2009 PMC team (in Wellesley, MA … more riders left from Bourne, MA).

Jul31

Muscles and Miles to Make a Difference

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Sarah and Chris during one of the PMC rides.

In a few days, my husband Chris and daughter Sarah will set aside the gentle appeal of speech. They have many stories to share, but for several hours, theirs will be the language of action, instead. This Sunday (August 5), they’ll put their feet, calves, quads, thighs, gluts, abs, spines, pecs, shoulders, arms, biceps, triceps, hands, lungs, hearts (okay, all their muscles) and minds to work in the annual Pan Mass Challenge bike ride. It’s their fourth year as a father-daughter team in this event.

It’s a case of deeds versus words. It’s putting your body and your spirit into gear, once a year, because you can. Riding for a cause. Making a difference. Remembering someone you love. Celebrating someone who survives. Honoring someone who currently lives with this challenge. Or marking a milestone in your own journey, too.

Changing the world, one mile, one life, one revolution, one ride at a time. It sounds dramatic, doesn’t it? Yet it’s true, and it’s possible for any of us.

All of Chris’s major bike rides support charitable causes. He already completed the Coast of Hope to raise funds for our family’s nonprofit foundation Bright Happy Power that works with children and families living with cancer and the ADA’s Tour de Cure to raise funds for diabetes research, an illness that impacts many of our friends, including several children and young adults here in Ipswich. He’s riding this weekend in the Pan Mass Challenge (his 7th year) to raise funds for cancer research through Dana Farber’s Jimmy Fund. He’s also riding later this season in the ALS ride to support research for an illness which affected fellow Rotarian Lou DeGeorge and which has recently changed the life of a peer’s 20-something son.

Over the past few years, Sarah has joined him in the PMC. It’s now a father-daughter tradition.

Even before Chris started riding, back in 2002, cycling teams rode in honor of our younger daughter Jessie, who was originally diagnoised with leukemia in 2001. The first team to ride as her partners were the Carver family and the North Shore Cylcopaths. She was their Pedal Partner. Within a few years, a local crew of Ipswich friends and North Shore colleagues formed a team to ride for Jessie …

Jessie and Sarah together on bikes.

There are also Kids PMC events that make it possible for children to ride, too. Jessie even participated in a Kids PMC in Topsfield while she was on treatment (see a PMC Kids video that features many children … you’ll find Jessie in a straw hat and blue dress).

The big PMC ride remains an annual family tradition. We still believe in its power. Chris and Sarah ride. I show up as SAG wagon (their own support vehicle) and cow bell chorus. I’m sure Jessie’s paying attention, and putting wind in their sails.

Many of our friends are survivors. Their stories are riveting; their experiences were difficult, but there’s a happy ending for lots of families, including Ipswich folks. We see some of them grow up and ride!

We surely know that the work of Dana Farber’s research programs (which is implemented in almost every cancer clinic and hospital around the world, by the way) gave us extra years with Jessie … providing alternative treatment regimens after she relapsed twice with leukemia. She had extra time among us: long enough for her to change many other people’s lives during the brief span of her own.

Make no mistake, pediatric cancer remains the leading “natural” (aka, disease-related) cause of death in children. This is a mortal illness for too many children and adults.

Yet research has made a major difference for many children; it has changed the course of many forms of diagnoses. This isn’t a hopeless cause; we are actually making headway.

Have we … I use the word “we” because our family and every other rider participating in the PMC surely feels invested in this effort … have we identified the causes and cures of every form of cancer? No. Have we narrowed down and improved the long-term survival chances for many children (and adults) diagnosed with varied forms of cancer? Yes. How many more lives can be saved and improved? Many. Have we promised a happy ending to every child or grown-up living with a form of this illness? No. Yet have the “odds” improved? Yes. Are there more survivors? Yes. Greater reasons for hope, decade by decade, year by year? Yes!

This is our family’s cause, for reasons that are obvious to anyone following along. Maybe it’s yours, too. Or maybe there’s something else that has become a personal challenge for you.

Regardless of what issue you care about, there’s something you can do. Volunteer. Walk. Ride. Run. Become a supporter. So many ways you can be part of the collective effort to change the course of events around specific problems.

Words are great. They’re my medium, a lot of the time. (You know I like them, because I use lots of them.) Language has tremendous power to affect people’s opinions or touch their feelings.

Yet actions? Deeds? These are the commitments that get work done.

Me? I sometimes walk for Childrens Hospital Boston (helps the hospital where Jessie was treated for 6 years). I volunteer at a water stop for the ADA’s local Tour de Cure ride (supports fundraising for diabetes) and I volunteer on the course for the Rotary 5k Run and Walk (fundraising for high school scholarships). Of course, I coordinate the Coast of Hope bike ride. Those are my athletic commitments, if you will. I’m more a behind-the-scenes volunteer as opposed to an event participant, but that’s part of what allows these events to succeed, too.

Cowbells as a call to action? Believe!

Meanwhile, our family believes that where Chris and Sarah are riding, Jessie rides along, too. Of course, you’re invited to support Chris and Sarah‘s PMC ride.

But really, this is also a reminder to choose your own cause, whatever it may be, and however you may decide to become involved. You are powerful. You have the potential to be a change-maker. You can create hope. And you’re not alone. In most cases, your time and talent is combined with the work of others. Together, your power is exponential. Your efforts make a difference. Really.

Do you hear the cowbells clanging? Ride, Chris and Sarah, ride!

Jul27

A Time for Every Matter Under Heaven

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On a grey and misty day, when the sky is overcast, and I have heard sorrowful news from many places, about the return of cancer in a grown man’s body as well as a little child’s belly, why do I feel like crying?

Today, it seems as if even the sky weeps. It comes down, not salty or briny, but as fresh water, pattering gently, renewing the earth.

Don’t you sometimes feel as if the world recognizes your emotions? On a bright windy day, in kite-soaring weather, you might think the earth’s spirits are as feisty as your own wheeling, enthusiastic thoughts. Then at a solemn time like this, it seems as if the earth mourns along with families who are in pain. On occasion, our world echoes back, gently, tenderly, but on a greater scale, our human-sized grief.

After all, this fall of rain is the letting go of pent-up pressure. It is the release of something that was carried great distances, transformed and contained, until it grew too heavy to bear any longer.

Oh, rain. Fall. Fall. Weep, when I can’t. When I don’t have a particular reason to do so, except that I empathize with the news that comes today.

Mind you, no one asked me to worry about a distant family’s  pain or grief. But I do. I care. It happens, I suppose, because humans are wired to have emotional connection with each other.

So today’s journal is a meditation on the news I heard from other cancer families, as well as what I have witnessed as a companion of friends in hospice and reflections from inside our own family’s journey through twice-relapsed leukemia, transplant and its aftermath.

Right now there’s an ache that seems as big as the sky’s sorrow, to know there’s pain inside these families. A different sort of pain than first learning about a dangerous diagnosis. A pain more final than wrapping your head around the threat of disease, then lifting a chin and taking a deep breath, planting your feet and looking fate in the eye, and saying, “We can get through this. There are answers. There is something to be done. We have hope.”

It’s an altogether different reality, when the experts tell you, “There’s nothing more we can do.” And that’s the news that different families received recently.

For the family who hears these words, there comes a new squaring-off with time, fate and faith. When you hear such irretrievable pronouncements, you may …

  • Want to stay right where you are, put your hands over your ears; pretend you didn’t hear, you don’t know, you cannot see. Hope that if you just wait in one place a while longer, ignore it, deny it, then this bad news won’t be happening.
  • Then argue, and say you’re going to find an answer, even if you have to go somewhere else, ask someone else, do something more experimental and unconventional, because this cannot possibly be all there is.
  • Pray. Beg. Barter. Beseech the Creator for a miracle. Or peace. Whatever is possible.
  • Eventually hold on tighter to each other, try to fill silence with everything that needs to be said, begin to check off the best and brightest experiences on your loved one’s wish list, because the calendar isn’t on your side anymore.

For a while, perhaps you think it can’t be happening. It’s not possible.

Then at some point, there’s another transition. A realization. It’s happening. Oh, Lord, this is real.

Relapse? Recurrence beyond known forms of treatment, or beyond any useful medical response at all? It’s not fair. It’s not just. It’s not logical. It’s not … it’s not anything you can easily reconcile or understand. Not at any age, but especially not a father and husband who should justifiably expect decades ahead of him, or a little child who may never attend kindergarten.

But it happens, all the same. For many families, the result of treatment after diagnosis is ultimately hope, survival, and recovery. For others, there is this other other outcome.

I feel … just a little … like I understand families who must keep vigil, make the most of their living time together and perhaps … probably … although we always hold out hope for miracles … find ways to say good-bye. Please know that I recognize that every individual and family’s journey is different. And the outcome isn’t pre-ordained, though science may say it’s predictable.

Because I can tell you more than one story … from our own years on treatment with Jessie … about children who survived, inexplicably, with amazing outcomes, after every scan and test and medical opinion said it wasn’t likely, or even possible. So it’s okay to keep holding out, at least in some quiet part of you, or maybe in the biggest, loudest part of you, for the miracle.

Meanwhile, it may be healthy to immerse yourself in this place where you are. This time … of being together in the face of farewell.

Such experiences can be profound. Meaningful. A blessing in their own way, though very difficult and wrenching. (Or something else entirely.) It depends, largely, on the family’s response, and the support of their caregivers and community.

As a family continues on this journey, they do so in the way that seems best to them. Together they think about … and feel their way toward  …  how to be together in the time that is given to them.

No one, bearing witness from the outside, can say what is right for someone else. We cannot step into the path, and avert a difficult journey. Change what will happen. Only the family, the patient and their loved ones, sometimes with guidance, can choose their direction, do their best with what resources they have, and go wherever this path leads them.

Meanwhile, their medical caregivers? The ones who say there isn’t anything left to do? Likely they have tried everything. And despite this insight, some specialists continue to try to prolong life. Caught up in such extreme measures and momentum, medical caregivers … and sometimes guardians and patients themselves … may seek intervention. (Which could be a viable choice, but might also be more damaging. Such decisions are best approached with much consideration, since you can’t be sure of the results, or the cost to the patient’s wellbeing.)

In the optimal scenario, part of a family’s caregiving team is thinking about different values and assessing the whole situation from an alternate perspective. This person may take the opportunity to pause events. Often we need a trusted individual, hopefully a professional who is trained and ready to handle this form of advocacy, to take on that role. Perhaps this is someone neutral, from outside the family: a trusted mentor, counselor or medical practitioner. Who can credibly say, “Wait. There are other consideration here. Comfort. Dignity. Your belief system. Let’s balance the invasiveness of more treatment, more heroic measures, with measures that will preserve quality of time.”

The healing a family may seek, at such times, is not always recovery from the diagnosis. Not anymore. Instead you wish for a dignified and peaceful letting go, that involves family and friends, and makes the most of the time that remains.

Yet even the experience of being together, and letting go, can offer a form of healing. Solace. Peace.

In the case of families treated for cancer at Childrens Hospital Boston and Dana Farber, this journey is often guided by PACT, its Palliative Care Team. For many others, it also includes hospice professionals. When such a practice is integrated into the process, it provides immeasurable resources and comfort for families.

After all, in the face of such relapses, your concept of time changes. Your focus shifts. With additional support, the energy of the family can be aimed at the most important issues: emotional and psychological interactions with each other. Other bodily concerns can be managed by a team of people who are experienced in this area. Sensitive changes in moods, emotional state or mental outlook may also be tended to, by caregivers knowledgeable about what’s happening inside the patient and family’s hearts and minds.

Just for today? So soon after families have first heard and shared this news, and their friends are just trying to let it sink in? Perhaps they aren’t yet ready for all of those concerns and negotiations, those steps and decisions.

Sometimes, it’s too soon to cry. So you let the sky weep for you. Until your own tears come.

Finally, there’s this other truth. Believe it or not, the weather will change. The sun will flicker into view, grow hot and bright again. And even in this part of a family’s journey together, when people are probably starting to understand that they may say good-bye to each other, a person may want to stand in the light, turn her face to the sky, and laugh as loudly as possible. Cast a long purple shadow across the earth. He may wish to listen as the world echoes back his presence, while he has breath to move and shape the air, to fill the wind with the sound of a human voice, human joy.

This isn’t new wisdom, although I have learned it firsthand, over time, too. It is written in many sacred texts.

Ecclesiastes 3: 1-8

3 For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.

There is a time and a season for  grief and hope, sorrow and joy, anger and serenity. One follows the other. They are all integrated. Parts of the same mortal experience. And the same sacred journey. Over and over. Again and again.

Just now,  it feels comforting that the sky seems to weep for the families whose pain we cannot ease. And later on, that the same universe will grow bright and laugh with us, because that time will come, too.

Jun17

Always A Dad

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Yesterday our family either rode or worked as volunteers for the Coast of Hope bike ride. Can we consider that our big Father’s Day gift?

Or maybe that’s today, when Chris and Sarah leave together with the First Church’s youth group on a week-long service trip in Staten Island. They will spend time in soup kitchens and shelters, working with people living with AIDS, homelessness and other conditions.

This hands-on work is how Sarah connects with her faith and spirituality, and it is a tradition she shares with her dad. He wasn’t planning to go this year – too busy to take off the week from work – but she asked, and he always says YES. It may be their last year doing this, since she’s off to college in the fall.

On Saturday during the Coast of Hope bike ride, we witnessed fathers and sons, fathers and daughters, brothers, husbands, grandparents, buddies, cousins, colleagues, teachers and students … so many families and friends and combinations of relationships, as people rode together. Regardless of whether we have been born into or adopted into a family, or taken into kinship through others forms of affinity, we are blessed and nurtured by the men in our lives. They play so many roles: our genetic families, and those who come into our lives in other ways, through marriage or community, work or sports, passions and needs. They have been our coaches and instructors, our counselors and advocates, our coworkers and our guides, our parents and our children, our friends and loved ones.

These men have been the people riding ahead, beside or behind us.

And of course, there are those carried in our hearts, who ride along where we cannot see them, but whose presence is always imprinted where we can feel them.

Yes, women and girls rode, too. Of course they did. Mothers and daughters, sisters, lovers, friends.

Yesterday our youngest rider was 6, and she rode with her father. They finished the 12-mile course together (and last week she ran a 5k). She’s a cancer survivor! And her father? He is probably one of her biggest fans.

The oldest riders on our course? Fathers. Grandfathers. They have sprawling connections and families across many states and intertwined through many bonds over the decades. And they celebrated their weekend with us, in order to help others.

They all rode beneath the shower of origami cranes folded by school children, and tossed into the air by firemen from Ipswich, one who came with his daughter to share the experience.

Who wore the bib #1 yesterday? Chris. It’s tradition. He was the visionary who originally suggested the idea of the Coast of Hope ride. And signs up first every year. And cheers us on when we’re tired and overwhelmed. He rides in memory of our daughter Jessie. And in celebration of our living child Sarah.

Yesterday, Chris cycled from our house out to the starting point of Coast of Hope. And before he arrived at the school? He rode up the hill to the stone beneath the maples at Cowles Highland Cemetery. Visited Jessie on the way to the ride … then rode on to meet Sarah at the starting line, because Chris will always be a father to both of his girls.

Jun13

Around the Bend

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It’s a countdown to the bike ride for our family’s foundation: COAST of HOPE. Most of my family rides. I coordinate the event.

The routes include a family-friendly 12-mile distance, a half-metric and full-metric century. Some people register in advance. Others come on the day of the event.

For months preceding this weekend, we finalize the routes, work out logistics with public safety officials, and coordinate details about supporting the riders with communications, water stops, mobile route teams, EMTs and other infrastructure. Volunteers take on roles that range from registration and site setup to driving the routes, taking photos, and providing support along the way with water and snacks.

This week, it’s hard to sleep. It’s both exciting and nerve-wracking. In many real ways, cyclists’ safety is in my hands. I’ll be at the main start/finish line, near the radio operators, answering my phone and field a lot of questions from riders and volunteers.

We’ll launch the ride with a flight of a thousand and more paper cranes, courtesy of the Ipswich Fire Department. We’ll hear music sung by Sarah Doktor, and another song recorded by Gnarly Charlie.

And then it will be in the legs, hearts and lungs of the bikers. To follow the signs. Read the maps. Pedal. Ride.

Of course, many others are sponsoring those who ride. And isn’t that the way such events work? We all do what we can. Some cycle. Some help make the ride possible. Others step up as sponsors.

If you wonder why we do all this? To help children and families living with cancer and other catastrophic challenges. Almost every day, I write about the impact that cancer has had on my family. One way or another, it shapes our reality.

Through our foundation Bright Happy Power, and this ride, we try to make sense of it all. To make a difference. To transform our family’s experience into something that can inform and educate, and help others going forward.

Thanks to everyone who will participate this weekend. To learn more, visit www.coastofhope.org.

4-1/2 years ago, I stood before about 600 people as we remembered my youngest child Jessie. And I borrowed an image that a friend had discussed with me.

You see, we’d gone for a walk with our daughters at Bradley Palmer State Park. Jessie was riding her purple two-wheel bike with training wheels.

Filled with energy  and ambition, she’d pedaled far ahead of us. The road curved, and we couldn’t see her anymore.

Of course, we knew she was just up ahead on the road. Just out of sight. Too far to hear us shout. But there just beyond our ability to see or reach her, riding along. Knowing we were behind her, keeping pace, watching, and traveling toward the same destination.

As a metaphor for the journey we’re taking, it’s comforting. She’s out there on the path ahead of us, around the bend, almost within reach.

We’ll catch up with her eventually.

This Saturday, as the Coast of Hope cyclists travel, they will ride the same route as Jessie. Coming the other direction. They will ride around the bend, toward us, into view.

We will cheer. Ring cow bells. Make noise. Celebrate their safe return.

Here are the words to the theme song Spin that Sarah recorded last year, and will sing again to launch the ride this year:

SPIN (Lyrics by Gail Doktor © 2011)

Hearts cry out as wheels start turnin’
One more ride and one more day
Dare ask questions along this journey
Hope for answers along the way

Sure I’ve been lost and I’ve been broken
Look for hope after living through hell
Had to stop and start all over
Still carry scars from times I fell

REFRAIN:
Oh you can’t measure life in speed and distance
Or starting points and finish lines
It’s where we go and who rides with us
Every moment, every mile

What comes next? No way of knowing
Each arrival includes farewell
In our coming is our going
… in between we spin the wheel.

REFRAIN:
Oh you can’t measure life in speed and distance,
Or starting points and finish lines
It’s where we go and who rides with us
Every moment every mile

BRIDGE:

Find the beat
Moving you onward
Breathe the song
Of our going
Hear the drumming
Of our heartbeats
Risk the turning
Of the wheel

REFRAIN:

Oh, you can’t measure life in speed and distance,
Or starting points and finish lines
It’s where we go and who rides with us
Every heartbeat, every hope found
Every moment, every mile

Jun4

Sibs

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Next weekend, our families are traveling from Illinois, Colorado, Ohio and New Jersey to help celebrate Sarah’s graduation. We’re excited to see every member of the family, from the young cousins Neal, Ben and Jason to aunts and uncles and grandparents from both sides.

Me? I’m especially looking forward to spending a few days with my sister Kathy. We rarely get such times.

Every few years, we drive or fly back and forth between Ohio and Massachusetts, grab a few days together, surrounded by spouses and children. We’re rarely alone.

And yet I’d argue, is there any bond that’s like those between siblings? We can pick up the phone every day, or months apart, and connect as if no time or distance separated us.

I am almost giddy with the anticipation of family in town. Of time with my sister.

But just as I was about to express that delight out loud, over dinner with Sarah and Chris? It hit me, as it does from time to time … as it will until the end of our days … Sarah doesn’t have the same relationship anymore. It’s been subtracted from her life. She doesn’t have a sister.

As an adult, Sarah won’t ever have a grownup sister to call on the phone, to chat with casually, or to talk about her own childrens’ potty training and commencement, to discuss intricate family matters and controversial national politics, to explore the realities of marriage and parenting and working-mom careers and all those issues.

Jessie and Sarah biking years ago.

Sarah’s sister Jessie may have moved to the next stage in her spiritual journey, but $%@&** that. Sometimes it’s not enough. Sometimes it’s just not comforting or sufficient, to believe she’s elsewhere, but connected to us.

We live here on this earthly plane. With everyday interests like the best recipe for chocolate cake or where to apply for the best college loans.

Sarah lives here. Her future is right here, right now, on this mortal plane.

Sarah doesn’t have a living sister to call about any imaginable daily realities. She is isolated in that way … and yes, many single children grow up lacking the same resources, but she once had a sister. She had an identity as a sibling. A belief in a family that would grow up and grow old together.

And that expectation is gone. Changed. Removed.

I talked to my own sister Kathy for 45 minutes today. Some of it was about the realities of Sarah’s graduation. Talking about the speeches at the ceremony, her scholarship, the dessert we ordered as a celebration … and some of it was just catching-up gossip about everyone in our families.

I could pick up the phone and connect to my sibling. For three-quarters of an hour, there was no one else who could listen or understand the way my sister Kathy did.

Sarah can’t call Jessie. Or text or email her.

$%^&#%^$. Sometimes it’s just not okay.

When I talk to my sister, and know my own daughter Sarah cannot grow up to call her little sister? When I hesitate in the company of Sarah and Chris, to recall and share my conversation with Kathy, because it immediately reflects what is absent from Sarah’s life?

Just #$%#$@. Sometimes there’s nothing like a good, polite stand-in for a swear. A rude curse word.

Jessie’s absence deserves a few swears. And Sarah’s loss deserves them, too.

Meanwhile, I’m reminded, humbled even, as I remember not to take such relationships for granted. I realize that not all sibling relationships are wholesome or healthy or stable. I know that families are complex in their connections and communications.

But when you don’t have the choice any more? When your chance to reach out, to make contact, to explore your relationship … when that opportunity is gone forever? It makes all the subtleties, all the shades of grey, disappear.

I’m glad I called my sister. I wish we didn’t live hundreds of miles apart, but our sporadic visits and phone calls will have to be enough.

Which they are. Because I bask in the luxury of knowing my siblings are part of my life. For now, there’s no reason to believe anything will change.

Yet I also know, all too well, that life changes. Sometimes suddenly. Sometimes gradually. It always changes, and what we have taken for granted will slip away, or transform.

Until then, I’m grateful. And when I get the chance, I’ll slip into the comfort of a phone conversation with my sister like it’s a fuzzy bathrobe and fleece slippers. Cozy. Healing. Familiar. Beloved.