The Boy With the Cobalt Hair

So this blog is different. This summer has been a different kind of Movin’ Right Along,  and I have struggled to put into words all the things in my mind (which is so connected to my heart—herein lies my struggle). But I had to write something, so…here we go. Inspired by a recent trip to VA to see an old and dear friend and her mighty boy…I wish I could wrap them in all the love and support and make the horrors they are facing go away.  I can’t. I know this. But if even one word here can encourage more folks to support this family through prayer, good thoughts, donations, happy mail, whatever, that is a tiny light in a very deep darkness.

This kid is really, really special; we love you, mighty Levi.

Peace. --k




The Boy with the Cobalt Hair

--my favorite color!--

Smiles,

Snoogles his kitten,

“His name is Flash” he says,

As kitten leaps

And bounces and springs and pounces,

Climbs the curtains!

Topples a shelf!

All claws and cuteness

A Flash of motion!


The boy with the cobalt hair

Laughs

At kitten’s antics

At silly videos

At stepdad’s fun--

Quiet joy sprouts everywhere and anywhere

Defying pain.


The boy with the cobalt hair

Loves

With gentle, unwavering trust,

His momma, her hair in cobalt, too, to match her mighty boy.

Her strength his strength, her love his love—

Reflecting each other

Bright and pure.

A bond that at first sight

Shines as eternal.


The boy with the cobalt hair

Battles

In quiet strength, in stoic silence

The cancer beast within;

Monsters that terrify and baffle

Insidious and perplexing--

“Just don’t worry about it,” he says

His gentle drawl speaks out his courage

When momma asks how can she be more like him--

His transcendence – supernatural?


The boy with the cobalt hair

Eats pizza!

Plays at the arcade!

Wins tickets!

Picks his prize!-- a blow up hammer—to bop his stepdad or his dogs

With gentle humor.


The boy with the cobalt hair

LIVES.

Unbound by diagnoses, 
anchored in 
his momma's love,

Freed from fear by her tireless care.

(He is the apple fallen near his momma’s tree,

her love his lifeblood,

Though she protests,

his strength reflects her own).


The boy with the cobalt hair

Knows he is loved.

This confidence shines true,

Beyond the cobalt hair,

Beyond the creeping signs of illness,

Beyond the quiet hugs we mommas share, 
our tears shed out of sight.


The boy with the cobalt hair

Teaches

That gentle goodness and purity of soul

Are NOT extinct,

That love gives strength to walk whatever road.

Stay close to those who love you,

those you love,

And you will overcome the darkness.

Momma Melina, Mighty Levi, Flash the Kitten, G & Me 

(I am not really an Amazon, just playing one in this pic??)

 To learn more about how you can support mighty Levi and his family, please visit Operation Love for Levi or Levi’s Superfriends on Facebook.  Please pray for our dear friends as they travel this very difficult road.

Circle the Wagons

So I am going to lay some truth on you. 

Some days are way not zen.

Some days are the anti-zen.

Some days are all “then in despair I hung my head, ‘there is no peace on earth’, I said”.

Even on days where I use every single tool in my Toolbox o’ Zen, there are catastrophic moments that leave me gasping for air and wondering which end is up.

These are the days where I am reminded of the power of community, probably the greatest lesson I have learned over the last 14 years, just after “Dang, My Kid is Mightier than All Mightiness” and “If a Doctor Comes to Find You In a Playroom, You Are In Big Trouble”.  In the darkest moments of G’s illness, the prayers of others, the food brought by people, the information shared by those a few steps further along in the trenches—these things carried me, carried my family.

This week has been one of those weeks for a dear, dear friend, one of those weeks of gut-punching devastation. 

The one peril of the power of community is the reality that we share each other’s heartache—but in this connection comes wholehearted living, and I would not trade it for all the zen in the world. It is in loving others and caring and working to help each other that devastating moments become survivable, if not exactly bearable. Even with the grief and pain of this connection—the love is so much more powerful.

As my dear friend received a devastating new diagnosis for her son, a young man diagnosed with brain cancer two days after my G, our community heard the call to rally—a community built of cancer mommas and good friends and chosen family. We are circling the wagons around Melina. Granted, that reference is derived from Wild Bill’s travelling Wild West shows (and then Hollywood), not so much history—but the idea of circling around those we love, those who are hurting, is a powerful one. We can’t fix things. We can’t make it better. We can only do those peripheral things like pray and feed and share info and maybe send ill-advised stuffed animals (I am trying not to, but…Must. Send. Something. Soft and Nice!). But we can do it in a circle of love and support and solidarity.

This is not what I planned to blog about today—especially since yesterday was supposed to be blog day—but wagons don’t circle themselves. I guess in Beauty and the Beast they might, but that would be creepy. But this is what needs to be said today.

Please join our circle of support. Please, in this month of childhood cancer awareness, help us love, support, and protect a mama who has been relentless in her love for her mighty boy. After 14 years, to have this moment—she needs our love more than ever.

We love you, Melina, and Kayleigh, and super Levi. Know that there is a circle surrounding you. 

Please join us on Operation Love for Levi on facebook; please pray/meditate/dance by the light of the moon for this family; if you would like to financially help the family directly (ie without the fees GoFundMe takes), use the Venmo app to send money straight to loveforlevi (with Melina McAlwee as the contact). 

And really. Let’s circle the wagons and find some cures for childhood cancer already. 

#loveforlevi

"We Must Labour to Be Beautiful"

“To be born woman is to know—

Although they do not talk of it at school—

That we must labour to be beautiful”

--Adam’s Curse, William Butler Yeats

When Yeats wakes me up at 6:30 am on a Sunday, I have to acknowledge that—even though nothing here is really all that original, and as usual it’s too long…but it woke me up this morning. So here goes.

In the last week or so I have had many striking encounters with beauty in the midst of lots of not beautiful. The mind-numbing context of our family’s daily realities can’t be denied, and I hate referencing it so often here (and I leave out an awful lot), but it truly covers every aspect of every day of our lives like a blanket of deep snow, cold and painful. Still, to paraphrase Superchick, there is beauty in pain.

Not that any of these things are PRETTY. Nothing about pediatric oncology or its effects on a family are PRETTY. But the warrior children I know are beautiful, 1000%.

Oh, the difference between pretty and beautiful. As a teen, like so many other teens, I so desperately wanted to be pretty , in those days LOooooooong before Zoey Deschanel made “adorkable” even a concept. Back then, it was just dorky. Meh. Today, kids are relentlessly bombarded with plastic representations of “pretty”—I get so irritated with the tv shows that reinforce the impression that ALL 7th graders have fabulous wardrobes and perfect hair and makeup—the pressure is worse now than ever. And even us older folk are constantly shown “real” people who are desperately aiming for pretty all the time through endless pursuits of botox and bigger bosoms and bedazzling.

( thanks to Kathy & Michelle who inspired that burst of alliteration) 

Don’t get me wrong; I love fashion, I haven’t been naturally brunette in 10 years, and hey, if you want to de-wrinkle via injections, go for it—but it’s not the key to happiness or the way we as women have to be defined. Now that I am old (and wrinkly, it’s true), I know that pretty ain’t gonna happen, and that’s ok, because really, does it matter? But maybe I can ”labour to be beautiful”… the real kind of beautiful…

BEAUTY is so deep, and so broad in scope. Beauty is powerful. Not to diss the Bible (I am so not dissing the Bible), but TRUE beauty isn’t fleeting. Beauty really does come from within. Beauty is mighty.

A week or so ago I read about a beautiful baby, a baby named   Pearl Joy Brown  who has a rare, unpronounceable disorder that may very well cut her life short. The fact that she survived to be born is something of a miracle, and the miracle of her life only makes her more beautiful. I was so struck with her beauty and her parents’ story of choosing hope in the face of overwhelmingly grim statistics—not an unrealistic hope of miraculous cure, not a denial of how dark some of their days are, or how precarious Pearl’s life is, but a hope that love and the inherent dignity of every human life would prevail no matter WHAT the medical outcome for Pearl. I shared Pearl’s story with my students as we talked about ethics and life issues in class…and how honoring the humanity of every child, healthy or no, special needs or no, is always beautiful, even as some days it is painful and brutally hard .

With some of the materials we covered in class this week, I also remembered again the intense beauty of Mother Teresa—that teeny tiny Albanian nun whose ministry of love transformed (and continues to transform ) the lives of so many people around the world. Mother Teresa is beautiful because of her words and ideas and her work, her love in the midst of the spiritual desert that no one knew of in her lifetime. I only got to see Mother Teresa once in my life, and even as a teen, I knew as soon as I saw her that I was in the presence of a saint, someone whose generosity of spirit and CHOICE to love changed the world. She literally had an aura of beauty and quiet power, she radiated love. 25 years later, I have not forgotten what that was like, to experience being in her presence, even from afar…

And yesterday…I saw pictures of a friend, glamorous, gorgeous photos of a friend who after years of battling the same medical demons with her daughter that we fight with our daughter (and with significant other complications), has had to enter her own battle with cancer.

SAY WHAT, WILLIS??
Yes, THAT was a moment in which God heard a lot of unprintables from me. Multi-syllabic combinations of extremely unprintable words used as every part of speech. I used to teach grammar, trust me, I hit Every. Part. Of. Speech.

Anyway, my friend is through chemo, and her teen daughter, an extremely talented photographer, took these pictures…

The most beautiful, breathtaking pictures of a woman I have seen in a long time.  And this is only one of a half dozen equally amazing shots.




photo credit Allie Broeniman.
Yes, her momma is gorgeous, and Allie has mad skillz.


Pure beauty on digital film. A beautiful woman who HAS “labored to be beautiful”—not by putting on makeup (although her makeup looks great), not by finding a wig (she doesn’t need one, she rocks bald like nobody’s business), but by LIVING. By just embracing the miracle of life each day as it comes.
These powerful images of grace, and humor, and grit, and toughness ARE beautiful in the traditional sense—she looks fabulous—but they are SO DEEP. This beauty pours out of my friend from every…um, pore. These are victory shots, because these photos show a woman who has triumphed in this moment over extreme adversity, with the love of her family, the support of her friends, and the grace of God.

You may have heard the roar—she is woman, and these photos celebrate the genuine beauty of what that means. Dang, I am blessed to be her friend.

In these days where I feel mentally like a shriveled crabby crone (think Miracle Max’s wife from Princess Bride—that’s what I feel like), I have to try and reach for the beauty that we get each day. Every day, every chance to take another breath—beauty. I have to draw inspiration from these examples of beauty and figure out how to channel that EVERY DAY.

It’s a labour (yes, with the extra u—it is way more than a labor without a u to embrace the beauty in each day), that is for sure. Now to figure out how to do it…beauty isn't passive, it's active...it's decisions and choices and living each day.

And THAT is what woke me up too early on a Sunday morning. The End...or really...another beginning...

An Ode to Oncologists

I have been having blog overload..too many ideas that I want to spew forth, from ill-advised tattoos to sparkly rainbows…and still zero energy to say anything.


So today, as my second born naps off chemo on the living room couch, I figured I would begin with an Ode To Oncologists.

I figure most folks have a list of people they’d love to meet. I would love to share snarky commentary with Jon Stewart, or have lunch with Bernie Williams, or just behold the splendor of Aretha Franklin. Two years ago I got to meet one of my favorite singer/songwriters, Sara Groves,  and I instantly burst into hysterics as I tried to tell her what her songs had meant to me during some really difficult patches in my life. That was a Meeting FAIL.

I imagine I can pretty safely speak for EVERYONE IN THE UNIVERSE when I say that an oncologist is NOT on your list of “new friends to make”.

I recently heard a talk that briefly discussed oncologists, how if THEY get cancer only 9% will opt for chemotherapy because it truly is useless (I have no clue if this number is even remotely accurate, although based on some of the other gems in this talk I would guess it is Ye Olde Fanny Number, pulled from where the light don’t shine)…how they prescribe poison for people and are resistant to any other treatment options…how they don’t listen, blah blah blah. Basically, if you are sick with cancer, the gist of this portion of the talk was Run Away From Oncologists.

Granted, some doctors have the bedside manner of slugs. Some don’t listen, some are gloomy, some are arrogant.

One could perhaps note that these traits are not limited to oncologists…ahem.

But I can say with 100% certainty that the folks giving this particular talk have never actually met a real oncologist, or certainly never spent time observing one of these docs at work for any length of time.

Over the last 8 years we have spent an inordinate amount of time hanging out in a pediatric oncology clinic at one of the best hospitals in the country. Because of the nature of the community in which we’ve found ourselves, we know lots of other folks who spend inordinate amounts of time hanging out with OTHER pediatric oncologists in other great hospitals around the world .

In our experience, and the experiences of most of our friends, these docs are Mother Teresas with medical degrees and comfortable shoes.

Oncology is not an industry, and I take great offense hearing it referred to that way. It is a vocation.

The first day we met our neuro-oncologist (specifically an oncologist for brain and spinal tumors), less than 24 hours after finding out that our child had massive hydrocephalus and a huge brain tumor, when my husband and I were nearly incoherent with grief and fear and our 6 year old was hungry and crabby…our doctor spent the first 10 minutes of our first meeting chatting with G. She instantly put her at ease, laughed at G’s silliness, hugged her….


We knew within 30 seconds that we had found the right person to save our child.

Over the years we have had some really horrific times and some really happy times, and our doctor has never given up on our child. She laughs with us, tells it to us straight, gives us all the time and information we need. Whenever I’ve asked a difficult question, she answers it like a walking encyclopedia.


I love the power of walking encyclopedia-ness. I love knowing that mighty lady is my daughter’s super hero.

And you know, we are not like the lucky one in a million to get our Dr. B. (although I am so grateful, and do think we are lucky).  Most of our friends in this community have similar stories about doctors doing everything possible to save THEIR children. Adult friends with cancer have similar relationships with THEIR doctors.

This is a tough job. During one brutal season in our journey several years ago, I said to our doctor via e-mail that I was so sorry she had to give us such horrible news, even as we were crushed I felt so bad for her…I knew, through observation, that we were not her only patients to end up ashen-faced and silent in the waiting room that day…and that must be the worst part of her job. And she replied, “you put a finger on my woes”…

Taking care of critically ill children and adults is a vocation. Using inefficient treatments is frustrating for these doctors, we have seen that time and time again. Our doctor suffered with us when G’s last scan was such a train wreck. She WANTED it to work for us, which is a massive DUH, but really. It apparently needs to be said! While the clinical trial G did was a total bust for her, I don’t regret doing it. We needed to try and push research forward and hope that this would be the magic bullet for G’s tumors. We so appreciate that our doctor talked us through our options, shared her insights both about the meds and about our G, how she would tolerate more frequent hospital trips, etc.

She wants G to beat the tumors. She also wants her to be happy.

Yesterday, as we were leaving the exam area to march over to the day hospital for chemo, I stopped by the door where our doc was filling out our appointment forms. “So it’s ok, right, that she’s doing so well? “ (I get an illogical fear that if my daughter tolerates chemo well it’s not working…granted, the last chemo whomped her and then failed, so I know this is an illogical fear, but it’s hard to shake).

Our doc turned to me and smiled, “She’s wonderful. This time it will be different.”

After 8 years, I know Dr. B doesn’t just humor me. She knows I am neurotic and anxiety ridden, and she and I think alike on a lot of things related to my G, which I so appreciate. I am still a wreck about our next scan. I told Dr. B I would be full of sunshine and optimism and sparkly rainbows, (sarcasm is my language of choice for clinic), but I did feel better. It was her love for my kid that made me feel good. Her hope gave me hope, and that is the best medicine for any of this, really.

We’ll see what this combo brings. I hope it brings stability, oh, how I hope that. But either way, I know we have a mighty and loving doctor on our side who is not part of some pharmaceutical conspiracy or in this awful line of work for the money. She, and so many other neuro-oncologists and oncologists like her have a vocation to try and save lives.

So the next time someone makes some big statement about oncologists as bad guys, think about how this could truly hurt people just starting their fight against cancer or tumors or any kind of monster illness. This is a battle, and assembling a great team is key to hopefully beating the beast…

Lord knows, it is a battle…

But that will be another post.

To the creators of "Warrior Eli", a few things you should know

The story of Warrior Eli went viral on Mother's Day--telling of a mother of 11 who died in an accident just before giving birth...one of her children is a relapsed cancer survivor named Eli.  By today, this story was revealed to be a hoax. 


To the creators of “Warrior Eli”, whoever you may be,


I don’t know why you thought it would be fun to create an elaborate myth about a child with cancer. Maybe you were inspired by Lifetime movies or Grey’s Anatomy or some sort of dramatic fiction that makes childhood cancer seem c’est tragique. Maybe you thought it would be funny to see if you could get your sad story about a young mother of 11 dying just before giving birth, while one of her young brood battled leukemia, to go viral. You don’t seem to have wanted money, since you asked for donations to go to Alex’s Lemonade Stand, a legit charity for kids who really do have cancer.

Honestly, I don’t really give a crap about why you did this.

And honestly, this isn’t the first time I’ve witnessed this. I, too, have believed a liar in the past, sent gifts to a phantom child. I learned from that experience.

Now it’s your turn to learn a few things.

One, most people are good, deep down. Parents of children struck with catastrophic illness can be some of the kindest, most generous people on the planet. This isn’t to say we need to start handing out halos –people are people, no matter how smote-- but folks who have walked through fire are the first ones to hand out buckets of water, if you know what I mean. When they hear that someone is facing the same tragedy they have faced, the FIRST instinct is to help, to assure the new family that they are not alone. They hurt FOR each other, because they so intimately know that pain that this kind of diagnosis brings. Even though it hurts to engage with other families sometimes BECAUSE of this shared pain, these parents do that.

So when you lied over time about “Warrior Eli”, you hurt real warrior parents. You should know that. You took the grace that these parents have to give, and you made a mockery of it.

Shame on you.

Second, your lies, your desperate appeals for the sympathy and concern of strangers hurt the real warriors, the children truly battling for their lives.

Last week we spent about 5 hours in the Alex Scott Day Hospital, named for Alex of Lemonade Stand fame, named for the money raised by the lemonade stands that funded this amazing facility. I sat there, watching poison drip into my child, and I had trouble believing the evidence of my senses. Yes, we were in the hospital. Yes, G was getting her port accessed (which means a ¾” needle stuck in her chest, not sure your “research” for “Warrior Eli” covered that). Yes, nurses double double checked G’s ID to make sure she was getting the RIGHT poisonous cocktail. Yes, my warrior smiled and gave me a thumbs up even though she was so scared, so scared about what the chemo would do.

The entire afternoon was surreal. A friend came to visit us, and I am not going to lie, I am always happy now, after knowing about people like you, people who lie about their children being sick, I am happy when someone sees us in clinic, sees my child like this. If I can’t even believe this is happening to us, why should other people?

You hurt the credibility of real families battling. You made us doubt when we should be feeling compassion.

Shame on you.

As a side note about Alex’s Lemonade Stand, who you dragged along , maybe to give your lies more credibility?: Alex was a true warrior. Because of her, kids like MY kid have a better place to receive treatment. When Alex was battling, the day hospital was a large room with a ring of chairs around a nurses’ station. Now children can have some privacy, if they want. They have working tvs and video games, there’s a playroom and a little kitchen where they can get a healthy bagged lunch while they are getting treated. Alex didn’t live to see this. You insult Alex and her work and the legacy her family has worked so hard to foster.

SHAME ON YOU.

Finally, you need to know that childhood cancer isn’t a means to getting noticed, or a way to look noble and cool. It’s a battle for life. It’s not pretend, or a play, or something you can treat lightly. You want to look noble and cool? Go HELP kids with cancer. Use your creative energy for something GOOD. You used pain and suffering of children for your own satisfaction.
Shame on you.

I don’t think there will really be any tangible repercussions for what you did. You simply lied, and people believed you. You didn’t get money, you didn’t ask for anything, from what I can tell. You simply lied, and stole the emotional resources and compassion of people that could be better used for REAL catastrophe. I do hope that maybe some corner of your mind still possesses a shred of decency, and that maybe, just maybe you’ll take some time and volunteer for Alex’s Lemonade Stand, or in a children’s oncology ward, or with Team In Training in honor of “Warrior Eli’s” leukemia. Maybe you can try and learn just a little bit about the deep truths discovered when you spend time with a child fighting for their life.

If not, then shame on you.