Category Archives: Fatherhood

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At least from a child’s perspective, fairly often, our “Parent of the Year” awards ought to be rescinded.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.

Jul6

The Best Part

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Yes, I can say, honestly, that I had a favorite moment about my daughter’s homecoming yesterday. Homecoming, again, you ask? Yes, she’s been traveling a lot this summer, and will do so again.

My older daughter is actually a grown woman, in so many ways. Over 18. Headed for college: Northeastern University, Boston. Focused on her degree: nursing. Traveling internationally at the end of the summer (Italy) and for the first semester at school (Greece). Meanwhile, working an office job plus bussing in a restaurant for several weeks, saving money. Making plenty of her own choices, without the need to check in with dad and mom about whether it’s okay or not. As far as I can tell, she uses sound judgment, and keeps herself reasonably safe, though she’s willing to take chances, too, which is a healthy balance. Living independently, setting her own hours, making her own plans.

She spent several days out of state with a friend. She saved up the money for the trip, planned it and was responsible for her own itinerary, goals and arrangements. In many ways it was one in a series of symbolic journeys that stake claim to her adulthood.

This was a post-graduation trip she had planned with a companion as a celebration. It was a whirlwind turnaround, just 48 hours after she’d come home from the youth group’s community service trip to Staten Island, NYC.

So much coming and going. It’s like rehearsal for her “big” departure to college, studying abroad for a semester, this autumn.

She just returned home last night. Again.

Chris (my husband) and I had talked about the transition each time she leaves. He has observed, and I think he’s correct, that her absence has more immediate and daily impact on me than him, in some ways. Not that he doesn’t miss her. Just that he goes to work and focuses on that, while even though she’s grown, my days remain more organized around Sarah’s needs and schedule.

Since she’s an adult and quite independent, that may sound surprising. Yet our days often intersect as we work out connections. It’s a careful dance of boundaries, of her emerging role as an adult woman in the house, a give and take between parent and grown child, the little daily steps of an intimate and changing family relationship.

So when she’s gone, I take time to become accustomed to her absence. To the lack of Sarah-centric activities: calling out hello when I hear the front door swing open or click shut, stocking the fridge with fruit she’d prefer or a beverage she enjoys, or scheduling how we’ll share the car for the day

Then just about the time I stop waking up, wondering if she’s home yet, or checking my phone for a call about the day’s plans, or asking if she wants to have dinner with us, or whatever other little ways we’d connect about logistics, she comes home again. And those “tuning in to the Sarah channel” habits settle back into place.

When she’s home, I check in with her. Not a lot, but hopefully enough to find out if she wants or needs anything from her parents during the day.

Sure, I thought I’d be ready for her launch to college in the fall. Yet the deep way in which I missed both Sarah and Chris when they were away in Staten Island was a reality check. Even the smaller ache of her trip to Florida was a revelation.

Realistically, I can’t prepare, totally, for her departure … I’ll have to experience it when it comes, go through the changes that come with her absence, and become accustomed to new rhythms and ways of being connected from afar, as two adults.

She’ll be away from home more this summer. Overnight. Weekends. Several days.

Each trip will be, for me, a lesson in letting go. For her, another chance to take up adulthood.

I’m learning the rhythms of a mom whose older daughter is alive and well, but living some distance away, and claiming the life of a grown woman.

Now you can argue that, yes, our children aren’t fully adult until their early twenties. Technically, their brains aren’t completely developed until they’re about 22. In some ways, they’re not even physiologically able to function as adults until then, because the part of the brain that exercises judgment about risk-taking and consequences, etc., isn’t actually all wired until their early twenties.

Wait, not actually an adult until 22 or 23? Yeah, right. Sure. Tell that to my high-school-graduated, off-to-college daughter. She feels like an adult. She acts, a lot, like an adult. She has many of the responsibilities of an adult.

Legally, state by state, our children have different rights at different ages. For instance, in the Commonwealth of MA, by age 15 they can establish sexual emancipation and seek contraception and treatment without parental consent. At age 16 they can start driving with a limited license. By age 18 they’re voting (we hope), may join the military, co-sign a college loan, and legally manage their medical care (for most situations, they’re now considered legal adults). After age 21 they can purchase and consume alcohol, or rent a car.

Those are all technicalities, and don’t apply to individuals. None of it, in reality, is the measure of cognitive development. Or emotional maturity. It’s just a date on a piece of paper that sets a standard to provide some common rights for all citizens.

So meanwhile, Sarah’s finding the real balance of what she wants to do on her own, and what she wants to share with us, her family.

And I’m learning to step back. Hold my breath. Wait.

I’ve done it before – let go as a child journeyed where I couldn’t follow — in different, more permanent ways, when my youngest child Jessie died.

Trust me that Sarah’s coming and going, her impending departure to college, and my own acclimation to being the parent of a grown daughter, is not the same. It is a separate and equally important experience. This way of letting go is a healthy and natural step for all mothers and children.

Natural. Also, messy. Imperfect. Sometimes heart-breaking. Other times exhausting. Exhilarating, for each of us, in different ways. Always a work in progress, as boundaries and expectations change. Hard to do. Yet desirable.

For each of us, her departures and returns are steps in a bigger journey. The transformation toward a different, more mature relationship.

I believe … I hope … that we will be mother and daughter, but also friends, on the other side of this evolution, this change, this transition. There’s so much I admire and respect about my daughter. Conversations we’ve already had. Others I hope we’ll have. Experiences we have shared, and others yet to come.

So when she came home yesterday? Well, Chris was stationed in the car in the parking lot, while I was in the airport, looking for Sarah. Sarah and I somehow missed each other, and she found dad first. Loaded her bags into the car. By the time I got back, everyone was buckled in place, ready to go home.

There she was, Sarah sitting in the back of the car, me in the front. I turned around, said hello, welcome home, over the headrest. Huh. We were divided by seats and belts, by knees and elbows, by the need to get out of the parking garage, and by just plain awkwardness.

The moment to greet each other had passed, a missed opportunity. Sigh. Oh, well.

Then when we stopped to eat dinner on the way home? She didn’t sit down in the booth right away. Instead, she stood there, and reached out with both arms.

Asked me, “Can I have a welcome home hug from you?”

Wow. My daughter.

In that moment, right there? Such grace. Such insight. Such good ways of saying out loud what she needs, laying claim to what is healthy in a relationship, and then doing something about it.

I loved that embrace. That Sarah wanted it. That we both needed it.  That she asked aloud for it.

I loved that we held on tight, for a long moment, and connected without words. Sometimes words liberate us. But sometimes words get in the way.

Meanwhile, that welcome home hug? For me, it was the best part of her immediate homecoming.

That hug said just about everything that really mattered.

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.