I love many people, and I love many people greatly, but there is no one I love more intensely or completely than one little boy named David. If you read my blog, you have come to know David as “Li’l D.” He is my son, and—although I once dreaded the prospect of parenthood—my life has been a million times brighter since he entered it three years ago.
For this one blog, I cannot call David “Li’l D.” Because, you see, this is a post about the loss of children, and “the loss of children” translates in my mind to “the loss of David.” Not “Li’l D.” David.
David: my exuberant, bossy, compassionate chatterbox of a son. My David.
Last September, I learned that September is Childhood Cancer Awareness Month. I ignored most of the posts I saw on the matter, because paying attention to them meant paying attention to the fact my own son could someday be among them.
I will cross that bridge if I get there, I told myself.
It was January before I steeled myself to read Donna’s Cancer Story, a series documenting one brave, beautiful girl’s battle with cancer. As I read it and for days afterward, I bawled, I cursed the universe, and ultimately held David tighter as I imagined what it would be like to say goodbye to him having barely just said “hello, my sunshine.”
As this September rolled around, I thought about what it would mean to me. I knew I’d read Donna’s Cancer Story again, and share it for those like me who couldn’t bear the thought of reading it the first time around.
I didn’t know I’d find myself also reading Aidan’s Cancer Story, and compelled by the memory of both Donna Quirke Hornik and Aidan Manning to look more deeply into why pediatric cancer awareness is important not only on a personal, empathy-building level but on an extremely practical one.
Thanks to What I Had Really Meant to Say for this opportunity to visit with hope today as part of the Hope 2012 blog relay.
The summer my mom snapped, I didn’t understand “hope.”
What I understood that summer was that I might never talk to my mom again. That the resources available to assist the mentally ill and their loved ones were woefully inadequate. That a woman could struggle through hardship after hardship only to find new hardships where at least one iota of peace ought have been.
I pieced hope together slowly over the years that followed. Shopping for hardware with my boyfriend one Mother’s Day, I found a colorful card that reminded me of my mom. I wrote on it that she’d always been a little colorful, but that her colors made the world brighter and richer. I delivered the card to her house only to have her scream and wave a shovel at me.
My boyfriend held one of my hands in both of his own as I cried in the front seat of his car. But I, like my siblings, kept at it. I believed something might happen to change the game tomorrow, or the day after it.
I passed by my mom on a run a couple of years later. Instead of screaming at me, she told me about all the neighborhood squirrels she was caring for. I slowed my run so I could accompany her all the way to the town’s bus station. I didn’t know if I’d ever have another moment like that, so I wanted to prolong and savor it.
Hope came a little easier after that.
Conversations were a little stilted when they happened, and my mom still occasionally accused her neighbors–and her children–of bizarre crimes, but conversations did happen. It seemed, after years of struggling, we might be getting somewhere.
Then, in the middle of 2009, my sister Rache called to tell me Mom’s doctor was concerned our mom might have “the C word.” My sister couldn’t even say it the first couple of times we spoke about Mom’s early appointments, so that I misunderstood what “C word” we were talking about. It hit me like a train to the stomach when Rache finally said the word: “cancer.”
That evening, I wrote my dearest friend:
I feel like I lost my mom several years ago, so I didn’t think it was possible to feel greater sorrow on that front. But hearing that physical death may also be imminent, it’s clear there are degrees of loss. Intellectually, I understand that there’s very little hope my mom as she existed while I grew up could be regained. Apparently, though, my heart has been holding onto hope that there might be some movement that direction. With physical death, what once was and what is now are all wrapped up neatly and concluded, with no chance of semi-happy endings.
When my mom’s diagnosis was confirmed, I was devastated. For years, I had hoped, and that hope had been destroyed by a single word spoken in a single second.
I thought and thought, and I fought with myself over what was and wasn’t reasonable in light of my mom’s diagnosis.
I’d trained myself to hope. I couldn’t not hope. So what, then, could I hope for?
I hoped that my mom would live long enough to meet her first grandchild, with whom I was seven months pregnant. It was a hope replete with moments of agony and frustration that I should be limited to such a small and fleeting hope, but I clung to it. I needed it to sustain me.
My son was born. Tickets home were purchased. My mom held her grandson.
She hated how she looked, but I saw only the love.
After my mom met my son, I invested my hope in the possibility of my mom’s recovery. And yet, there came a time where it was clear that hope would not be translated to truth.
I hoped my mom would get to see my son again, but I was struggling. It was easier to tell myself to hope than to actually tend to its tiny embers and set them full aflame again.
My mom did see my son again. He brought her great joy through suffering written so clearly on her face that I couldn’t help but feel its echoes, and despair.
He brought her so much joy that, occasionally, she’d grit her teeth and try climbing unsteadily from her bed, saying, “I will survive. I will live and see him grow up. I will meet my other grandkids.”
I would smile at her and try to calm her enough to get her back in bed, and then retreat to the cold bedroom down the hall and cry, and cry, and cry.
I didn’t know what to hope, but I knew better than to share that fleeting, wild hope of hers.
A week after the last time she told me this, I wrote my friends a letter that began:
At 2:35pm yesterday, my mother breathed her last breath in the loving arms of my sisters.
The letter described many things that brought me joy, and great love for those who’d helped me through the last months of my mom’s life. What it didn’t describe was hope, for I felt hopeless, even as I wrapped up that letter thusly:
Next October 30, I will celebrate alone the birthday I shared with my mother. But she’ll be in my heart, and the gifts she bestowed upon me will carry her spirit forward in my every action, every day.
At my mom’s memorial, I caught sight of my son sleeping and felt the slightest stirrings of hope.
My mom’s final chapter had been written, but my tiny man’s life had so many chapters remaining. Imagining those chapters filled me with joy that couldn’t be touched by words, and kindled those stirrings so they began to take on their own vibrance.
As I worked with my siblings to clean out my mom’s house, I thought about all the chapters remaining my son. I saw that I, too, had many chapters left in my own life.
I chose hope. Even as I bawled, and cursed, and listened to music I hated to know my mom would never hear again, I chose to believe that there was good ahead.
I would edit one of my books. I would nurture my son’s passions. I would lend a hand to others as often as I could. I would focus not on what had been taken away from me, and the inevitability that still more would be taken away from me with time, but on all the possibilities left open to me, my son, and my loved ones. They were so, so many.
In August 2009, I believed hope was lost. In August 2012, I see that hope was simply hiding then. She was clenched tightly to herself, nestled deep within me, keeping herself safe until once again free to expand to fill me.
Hope has since unfurled and stretched herself into every piece of my life. Sometimes she retreats, but I know she will find her way back to me, and I to her. She needs me to give her my voice in this world; I need her to remember why I have a voice, and how to use it.
Hope was never lost to me. She just needed to be freed from the constraint of being tied to one place, to one situation, or to one person; for, indeed, she thrives best of all when her feet are untethered and she is allowed to wander as free and far as the human imagination extends.
Instructions for Hope 2012: A blog relay
Step 1: Write a blog post about hope & publish it on your blog.
Step 2: Invite one (or more!) bloggers to do the same.
Step 3: Link to the person who recruited you at the top of the post, and the people you’re recruiting at the bottom of the post.
Melanie Crutchfield will be holding “Closing Ceremonies” around August 10 and will gather up little snippets from people that wrote about hope, so make sure you link back to her as the originator of the relay
I call on:
“People are like stained glass windows; they sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light within.”
— Dr. Elizabeth Kubler-Ross
Many years ago, my brother asked me to picture a mutual friend of ours.
After I had her image firmly in mind, David asked, “Do you see her scars?”
I did not. Her face had seemed perfectly reconstructed in my mind before he asked; in light of his question, I felt ashamed, as if I’d been caught in the act of surreptitiously editing a work not my own.
My brother’s take was different. “You don’t picture it for the same reason you don’t really see it when you’re with her. It’s irrelevant. Her beauty shines from within, not from the specific arrangement of features on her face.”
The conversation was much more extensive than this, and my brother’s overall approach much more nuanced, but this is the part that has stuck with me. It was the part on my mind after I shaved my head for St. Baldrick’s last month.
I expected to be a wreck during the actual shaving. I also expected to be mildly chagrined by how baldness emphasized my already prominent forehead. What I didn’t expect was that I’d feel more beautiful than I ever had before.
I also didn’t expect the staring.
The day after I shaved my head, I caught a couple dozen—yes, a couple dozen—adults staring at me with eyes wide and mouths agape. I felt confident and gorgeous with my newly fuzzy head, so it was easy for me to smile back at strangers even while my discomfiture grew.
I wondered: What if I had lost my hair to cancer treatments? What if I were struggling to feel beautiful and strong in the face of the fight of my life? A fight for my life?
My stomach knotted at these thoughts, yet despite my initial chagrin, I quickly stopped noticing the stares. I even forgot that I’d shaved my head. A neighbor asked, “What did you do?!” following which I launched into an explanation about how she’d heard my son, Li’l D, screaming because I’d forced him to get off the elevator. (The nerve!)
My neighbor gestured to my hair and said, “I mean, to your hair!”
I laughed and said I’d had it shaved for a charity. With her hand to her heart, my neighbor said, “Thank God. I thought you were going through chemo.”
Once in a while, though, someone’s attention is so obvious it’s impossible not to notice. In these cases, I’ve continued my strategy of simply smiling back, an astonishingly effective means to get someone to stop staring.
Out to get lunch in the middle of a recent workday, I caught a woman staring at me with a mixture of sadness, dismay and pity so blatant, it totally disarmed me.
After a moment, I smiled at her and she looked away. For about two seconds. She then resumed staring, looking away again for only as long as I gazed and smiled directly at her.
The scenario played through my head for hours afterward. I wished I’d piped up, as recommended by blogger Counting Caballeros, “Thank you for staring. I shaved my head to raise awareness for childhood cancer, and since I obviously have your undivided attention, would you like your donation to pediatric cancer research to be cash, check, or charge?”
I don’t know what it’s like to fight cancer firsthand. I don’t know what that encounter would have felt like if I were fighting cancer right now. All I have is my imagination, and in my imagination, the feeling was horrible.
The feeling wasn’t about the hair. It was about what hair, or the lack of it, seemed to automatically represent: the presence of illness. The reminder of human mortality.
I felt an invisible wall of “otherness” being built around me as I recalled the emotions reflected in that stare, and those I witnessed right after I shaved my head.
I wondered: Would I be so different if I were fighting cancer? Would I somehow be less human, or less worthy of the common courtesies afforded someone with a full head of hair? Or would I still be me, Deb, just trying to enjoy a bite of lunch without being reminded that I’m not only fighting cancer but that I’m also now set apart in the eyes of those around me?
I can’t go back in time. I can’t redo that lunchtime encounter. But the next time I experience this, I’m going to say something. I don’t know what, exactly, or if it will be inspired by the above recommendation from Counting Caballeros, but something. Something that reminds others that I am human. That we are all human, whether tall or short, skinny or round, black or white, bald or hairy, fighting cancer or cancer-free.
And now, here, I’m going to ask you to say something if you find yourself caught in the act of staring. If you’re curious, or concerned, or just want to say, “I’m sorry, but you’re so radiant, it’s impossible to look elsewhere,” please do. Say hi. Embrace the awkwardness, for words like these connect even as they potentially embarrass us. Instead of building invisible walls between people, they are part of our building bridges of understanding.
I’m glad my neighbor asked what happened to my hair. Her words opened a dialog that brightened my day. In both asking and the way she asked, I felt that no answer I gave would’ve scared her or inspired her to treat me differently, apart from perhaps to share words of support.
If the thought of talking to a stranger terrifies you, consider offering a smile. The power of a smile is enormous.
It’s that smile that shows the light within, and all those beautiful lights within reflected outward that brighten the world for all.
© 2012 Deborah Bryan. All rights reserved.
Duplication in whole or substantial portion is explicitly forbidden.
* Read the follow-up to this post here.
I’ll be bald in eleven days.
There was a time I swore I’d never have hair shorter than chin length again. At 18, I’d made the unfortunate mistake of dozing off at the hands of a new stylist, who thought I’d look just fabulous with one-inch hair.
Despite my old vow, I choose baldness now.
I do this to stand in solidarity with children who do not choose baldness, or cancer, but face these things determinedly nevertheless. On March 24, 2012, I’ll join my friends Chris and Karin in having my head shaved for St. Baldrick’s children’s cancer charity.
I love my hair. Don’t get me wrong. I’m going to miss it while it’s gone. But there’s a heckuva lot I love even more in this world.
As I learned at 18, hair grows back. People do not, so I feel honored to do this one small thing I can to help some young people battling cancer stay here in this world, and illuminate it longer with their own unique and beautiful gifts.
If you’re able to donate, please do so here or via team Blissfully Bald. If you’re donating or wish you could donate in someone’s honor or memory, please tell me a little bit about them in comment here so I may share your words in a future blog entry. I believe it is a blessing to the living to remember our departed beloved.
If you are inspired to share this blog, please know now that I am deeply grateful.
Am I a little nervous about my impending months without much hair? Sure. But right now, my hair will do much better off my head than on it. I live in Los Angeles, for Pete’s sake! I don’t need hair to keep my head warm here. Not even in March.
And if I do end up needing a little help heating my head? It just so happens I’ve got a hot pink wig lined up for the occasion.
I’ll be happy without the wig, though. ‘Cause you know what? Beautiful is beautiful, with or without hair. Seeing my mom without her hair taught me that.
Gorgeous, spirited Donna Quirke Hornik, subject of the series that inspired me to make this choice, helped me see it more clearly still.
I’m gonna be bald. And, man, am I gonna be bald in great company. Present in person, and ever-present in our hearts.
© 2012 Deborah Bryan. All rights reserved.
Duplication in whole or substantial portion is explicitly forbidden.
It took me three minutes to go from shaking my fist at Valentine’s Day to believing there might be some merit in it.
As a kid, I loved Valentine’s Day. How could I resist adult-sanctioned sugar highs? How could anyone?
As an adult, I’ve scoffed (generally quietly) at the idea of designating a day for showing love. I’ve shaken my head at the idea love could ever truly be expressed in a purchased gift or greeting card.
When Chris asked if I’d be interested in writing a Valentine’s Day post for a good cause, I was too busy balking at the words “Valentine’s Day” to hear the “good cause” part of his question. But as the seconds ticked by, my thoughts raced faster and faster toward a surprising conclusion.
Last year, I argued against Mother’s Day detractors on Facebook by stating that none of the gifts I wanted could be bought at a store. I wasn’t celebrating it as a way to get mad loot. I wanted only a morning off and the gift I described here. Besides, I typed furiously, the day wasn’t meant to make up for a year of love not shared or shown. I felt it should be taken as a reminder: Hey! Look! I know you’re busy making ends meet, but slow down and take time out today to love on the moms who light up your life!
Within 180 time-stamped seconds, I realized that my words about celebrating Mother’s Day last year were no less relevant to Valentine’s Day. Regardless of its less than savory origins or its original link to one’s romantic love, I wondered, was there really any reason I couldn’t personally celebrate it as a day of remembering to stop and say “I love you” to all those who brighten my life? That I couldn’t designate it a personal “reminder day” to step outside of time and say, “I may get caught up in my commute, job, blogging, editing, writing, and parenthood, but my love for you is timeless”?
Love needn’t be expressed with boxes of chocolate or greeting cards. It can be expressed in a smile, a hug, a loving word, a song. A day itself can’t tell us what or how to celebrate. It doesn’t demand we show our love on it and it alone.
That’s a human choice. We choose how we show our loved ones that our lives are better for them, on Valentine’s Day or any other day of the year.
Today I change my stance on Valentine’s Day. I do so thanks to the innocent question of a friend who asked if I’d consider posting about a little girl named Donna, about whom I previously wrote here.
Donna celebrated her last Valentine’s Day in 2009. In October 2009, she died of cancer.
But here’s the thing: for her four years, she lived. She lived with joy, bravery and panache that continues to inspire thousands of people who never met her face to face.
I admire not only Donna, but also her mom, Mary Tyler Mom, who lived through 31 months of her daughter’s cancer treatment . . . and then relived it through Donna’s Cancer Story so others could see for themselves the brilliance of her daughter’s spirit.
Does my admiration stop there? Not by a long shot. I admire and applaud all those who watch their amazing little lights shine on in the face of cancer, and those who work tirelessly to see those lights endure for many decades yet.
I wonder what it would be like to kiss my son goodnight every night, not knowing if I will ever get the chance to kiss him again. Wondering alone makes me wish a million times over I could take away illness and grant life.
That’s outside of my power. What’s within my power is helping Donna’s light shine by telling you about her courage and exuberance. By telling you about the countless lights holding strong in hope for a cure, and about what you can do to help some of their parents know the joy of many more years of bedtime kisses and dance recitals.
From St. Baldrick’s, here are some of those ways:
How can you help conquer kids’ cancer?
1. Donate now to fund lifesaving research
2. Sign up as a shavee or volunteer at an event near you. (Once you find an event, click on the blue box that says “participate at this event.” If you want to join the Donna’s Good Things team, click here.)
3. Can’t find an event near you? Organize your own event. The St. Baldrick’s Foundation will coach you every step of the way. In particular, they are looking for new events in Maine, Mississippi, Alabama and Utah.
I will match up to $250 of total donations made by you to the Donna’s Good Things team. If you donate, please forward me a copy of your receipt (sans personal info!) so that I know how much to match. If you’re donating in someone’s honor or memory, please let me know in a few sentences whose honor/memory so that I may help their light shine in a follow-up post.
Donna lives on in her family members’ hearts, my heart, and in thousands of other hearts that see the beauty of baldness in a way they might not have without Donna. For her parents and those who knew and loved her day to day while she still danced through this world, the dazzling breadth of her impact cannot possibly replace the loss of her light here.
Yet she is remembered with love, and her memory is a blessing to many children who might live longer because of her. And you.
Let’s make that count, on Valentine’s Day and every day. Together.
P.S. Karin of Pinwheels and Poppies, Chris of From the Bungalow, Katy of I Want a Dumpster Baby and Lisha of The Lucky Mom are also blogging for Donna today, along with several others! Be sure to visit Donna’s Good Things on Facebook to find all of the posts. Happy Donna Day!
© 2012 Deborah Bryan. All rights reserved.
Duplication in whole or substantial portion is explicitly forbidden.
One month ago today, I posted the hardest thing I’ve yet written: Six hands for lifting: on my mom, mental illness, fear & hope. In the wake of posting about my experiences with my mom’s mental illness, I was stunned by the outpouring of support and like stories. In addition to the peace of having confronted my grief head-on, I was then greeted with thousands of other blessings in the form of your words.
The message in this is simple. I’m not alone. You’re not alone. The more we share our experiences, our hope, and our love, the brighter the world will be for those who continue to suffer the many hardships correlated with mental illness.
“Six hands for lifting” was prompted by the beautiful, heartfelt book Stop Pretending. It’s my wish this book will eventually land on each of your bookshelves, so that you may share it with others who will be touched by its accessible truths . . . and perhaps be compelled to find their way to healing, and help, in other forms.
On July 15, 2011, I’ll give away two paperback books apiece to three winners. The first book of each set will be a copy of Sonya Sones’s Stop Pretending. The second book will be of each winner’s choice, with the caveats that each must be both available on Amazon and cost $20 or less. (I’d love to hook you up with autographed, out-of-print first editions of your favorite book, but I’d also love to help my son with college someday!)
If you live in the United States and would like a shot at winning one of these two-book sets, do at least one of the following prior to 12:00 AM Pacific Time July 15, 2011:
1. Comment on this entry indicating your interest.
2. Email email@example.com with the subject: “Free books FTW!”
3. Tweet about this giveaway, mentioning @deb_bryan, and send me an email with the subject: “I tweeted it!”
4. Share this link on your blog and send me an email with the subject: “I blogged it!”
5. Share this link on Facebook and send me an email with the subject: “I shared it on Facebook!”
If you’d like more than one shot at winning, do more than one of the following! You’ll be entered once for each of the above actions you take.
Winners will be announced by first name on or shortly after July 15, 2011.
* 100% no-nefarious-usage-of-your-private-info guarantee! Your email address–and any other contact info you provide–will be used strictly for purposes of this giveaway. Once winners are announced, I’ll email each winner to coordinate shipment. Afterward, all private info will be deleted and/or otherwise destroyed. As with my first book giveaway, this will not by accomplished by devouring. :)