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FTIAT: I will not sit idly by…

Chris (From the Bungalow) and I met face to face in March 2012, when I flew to Chicago to join him and his wife in shaving heads for St. Baldrick’s. Before that meeting, Chris and I had been blogging buddies for nearly a year. In light of our frequent thoughtful exchanges, I fully expected my introversion to be subdued even in the face of our first meeting. It was.

If you’ve been here a while, you know Chris inspired me to read the life-changing Donna’s Cancer Story. You know implicitly of his eloquence and ability to persuade; but for that, I would have a much fuller head of hair right now. What you may not know is that he’s also a father, a musician, a music therapist and one hell of a friend. My offline life is better for knowing Chris, and I trust you will understand why when you read his powerful words below.

Recommended post: Blissfully Bald

I will not sit idly by…

“They’ve ruled out everything else. I have ALS.”

As I listened to my mom speak those words, they didn’t make sense. Somehow, it never really registered with me until just now, right after I typed them. There has been an underlying malaise these past few months following the loss of my parents’ house to fire, and shortly thereafter, the sudden loss of my maternal grandmother to cancer. But that diagnosis… those words? Superficial until now. I didn’t want to accept it. I couldn’t.

Me, age 18, with my mom and grandma about two weeks after losing my grandpa to cancer. We lost my grandma this year.
My mom is dying, and I am helpless to stop it.

Lou-fucking-Gehrig’s Disease, terminal in 100% of cases. Terminal? How?! How do we not know a goddamn thing about this? How did this happen?! Forget about that. How is my mom handling her prognosis? How is my dad handling it? My sisters? Me?

What am I supposed to do now? What is my mom supposed to do? I have more questions than answers. That’s an overwhelming place to be. I’m sad and angry. She lost both of her sisters when they were in their 30’s, lost both of her parents to cancer, and now this? An innocent, loving, caring mother and grandmother sentenced to death at some not-so-distant point in the future while her body slowly shuts down? Bullshit. It’s not right. It’s not fair.

And yet, there’s this voice in my head that keeps whispering to me… Read more…

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Choosing baldness. Choosing hope.

* 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.

How wrong you were, stylist. How wrong you were.

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.

Beautiful with or without hair

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.

A mother’s wish for Valentine’s Day

Three minutes.

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?

Non-celebration of Valentine's Day 2008

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!

Let 8th grade "Debbie" tell you about those origins!

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 the Fairy Flower (photo used with permission)

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.

4. Have questions about getting involved? Visit http://www.StBaldricks.org or contact heather@StBaldricks.org.

One rockin' dancer (photo used with permission)

TMiYC readers:
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.

On bald heads & being unending

Although this post begins with a tragedy, it is a post about hope.

I was thrift store hopping in 2003 when I missed a call from a girlfriend. Stepping out from the thrift store I’d been shopping at, I dialed my voicemail access number. I knew something was wrong when my new voicemail began not with “Hi, Debbie!” but “Oh, Deb.”

Only a handful of seconds later, I sank to the sidewalk and thought, “No. No, this is a terrible joke. This can’t have happened.”

But it had.

Months later, I continued to struggle with how suddenly lives could be ended. I found solace only in my long nighttime runs, during which my thoughts ran even further and wider than my legs.

Finish line

One evening shortly before the 2004 marathon that would be my first, I noticed a car passing by me slowly and repeatedly. I started getting anxious about how dark it was, how long it had been since I’d seen another person, how if someone managed to get me into their car, there’d be no one around to notice.

I ran in the direction of the nearest police station and I prayed. The car fell away, eventually, but the adrenaline didn’t.

I wondered about what would have happened if the ending there had been different. Would my friends remember me for all the happy memories we shared, or would they remember only how my life ended?

The thought horrified me. As I wept while running homeward, I thought over and over again: We are so much more than the ways that we end.

Afterward, I endeavored to remember those who had died not for how their lives concluded, but for who they were while they lived. For their lives.

And yet, when my friend Karin began daily posting links to a blog series about a young girl’s struggle with cancer, I thought, “Gah, why would I want to read so extensively about a girl’s death?”

Donna the Fairy Flower (photo used with permission from Mary Tyler Mom)

It was only when I read Karin’s husband Chris’s Freshly Pressed entry about why they are going “Blissfully Bald” that I understood just how much I had misunderstood. This wasn’t a story about a girl’s death to cancer.

It was a story about a girl’s life.

As I read Chris’s post, I knew I’d have to read Donna’s Cancer Story. If her life story had moved him so, so very much that this post flowed from its reading, I had to experience it myself.

Friday evening, I started reading her story.

Saturday morning, vision blurred from crying, I finished reading it.

Notice what I did there? I didn’t say I finished the story. I said “I finished reading it.”

That’s because Donna lives on in the things we do to remember her.

On March 24, my dear friends Chris and Karin, subjects of my first stick figure animation, will shave their heads to raise money for St. Baldrick’s. I’ve donated, which you can do via the “Blissfully Bald” link below. I’ve tweeted. I’ve posted it on Facebook. Now, I must share their fundraising efforts here, in the place I’m freest to explain everything they mean to me.

It’s been almost two years since my mom died of cancer. I remember daily the strength I feigned to cover the helplessness of watching her fade.

I remember deciding to run a half-marathon to raise money in her memory. It wouldn’t bring her back, but it was something I could do.

When you’re watching cancer steal away someone you love, there is painfully, wretchedly little you can do.

In running, I found a way to look forward instead of backward. I couldn’t bring my mom back, but I could take very literal steps toward ensuring someone else’s life didn’t end the same way.

Always and forever

So I ran, with my siblings, for Mom. When we were done, we placed our congratulatory roses on her headstone, and I felt a fluttering of peace. It faded quickly, but feeling it made me know it was a beginning. It was another step in the right direction.

This afternoon, as I drove home from brunch with girlfriends, I marveled at how deeply interconnected are things and lives whose connections we can’t always see: a pediatric cancer charity, a dojo, my mom, a scary encounter running, a pair of Michigan bloggers, and a little girl who filled the world with so much brilliance in the four years she was given to do so.

I thought about the 21-year-old woman the memory of whom inspired the memorial scholarship that enabled me to finish law school. I recently sent a note, via the law school, to let her family know that she continues to inspire me, although I never met her.

I remain grateful to this woman, and the family whose steps to remember her so tangibly impacted me. My life would not be what it is today but for her blessed memory.

Our bodies will cease. That is inevitable. But we will live on in the hearts of those who shared the journey with us, and whose lives we touched with our actions. In the hope that we helped build through these actions.

It’s thus I leave you with the words I shared on Facebook right after finishing reading Donna’s Cancer Story:

Last night I started reading Mary Tyler Mom‘s blog series “Donna’s Cancer Story.” This morning, through tears so abundant it was hard to see, I finished it.

I hope you’ll consider reading the series yourself, someday if not today. But if you don’t think you can read the whole thing, I’d recommend you read this last entry. It’s full of thoughts about what you can do to help Donna live on in the good things you do today.

Team Blissfully Bald

If you are able to donate to From the Bungalow‘s team “Blissfully Bald,” that’s one thing. There are many more that don’t cost a thing but will help make life easier or brighter for someone else. Check out Donna’s Good Things for more on this, even if you don’t read this entry or the series.

Like its name suggests, it is full of good things, but there’s always room for more.

After I post this, I’ll greet my little man for the day, and be grateful. And I’ll remember these words, this morning and always, as well as the little girl whose story brought them to me:

“Choose hope. Live until you die.”

In doing so, you’ll live on further still in the memory of those blessed to love and have been loved by you.

© 2012 Deborah Bryan. All rights reserved.
Duplication in whole or substantial portion is explicitly forbidden.

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