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.

Zen and Memory

“MEMORY! All alone in the mooooooonlight! I can smile at the old days….”

I will take “Oversung Karaoke of the 80s for 200, Alex…”

With all of the sturm und drang of the last few weeks, I have been thinking a lot about zen and memory. I tend to think about memory a lot, for my entire life I have been intrigued by the history of things, the memory I can feel in different places. I know that sounds a bit wooooooo, but I do.  Kind of in a “the rocks cry out” sort of way. Places hold memories as much as people do, and if you know their stories, you can feel those memories of place.  No wonder I became a history teacher. But THAT is another story for another time.

Memory can feed and nurture zen. I remember visiting my great grandparents in Western Kentucky—the smell of Grandma’s house (often a lovely bacon-y smell, she made us bacon every day for breakfast, a rare treat), the heat of the sun in her backyard against the cold water from the hose that we used to fill up an old metal basin to play in, the comfy chair where Grandpa spent his days. Even the ughulous  parts of those trips are not bad memories, even though I joke about them—the epic van breakdowns in New Stanton, PA, Zainesville, OH, Bruceton Mills, WV, the scary hotel situation where mom unleashed her Jersey on the staff while dad was packing the car. ;)

 I remember childhood church-ish picnics where my mom would bring cold chicken and green grapes and we would sit in the sun and have fun activities with other families.  I remember playing elaborate games of time machine in our backyard apple tree. Memories of my childhood home, of Christmas traditions, of love and family feed my zen when I remember to revisit them.

But what if you can’t smile at the old days? What if those memories are BAD?

My son has told me in the past that he does not remember much of his life before he was 10.  He said it sort of nonchalantly one day, and it took my breath away…since those years were full of t-ball and playgroup and homemade Halloween costumes and the Yankees winning an awful lot in the fall—good, zen-feeding things.  But when my son turned 9, his 6 year old sister was diagnosed with brain tumors. Everything fell apart.  He does not remember before that.  The bad memories clouded the good.

Bad memories have a way of sticking around. Not every single detail—but the worst moments are branded into our consciousness somehow.

14 years later, I can now remember and talk about the early days after my G’s diagnosis without weeping. Even THAT took years. Those memories are excruciating, and certain moments are seared into my mind.  The first two years after diagnosis were brutal.  Now my memories can sometimes help people (G failed so many protocols, we have a lot of experiences of different drugs we can share—without the emotional turmoil and terror each failed protocol produced).  The 5 years AFTER the first rounds of treatment were pockmarked with small progressions, scares, and the ever present threat of an immediate resumption of treatment.

Memories are hard sometimes. The “old days” were not always beautiful.

My Rosie asked me yesterday if she used to be super happy when her siblings came home from school. She saw some of our neighbors’ kids running out to greet their siblings, and thought it was so cute. “Did I do that, Mom?” she asked.

I couldn’t remember.  I Could. Not. Remember. I realized…Rosie was 2 when G got sick. G was on treatment during the whole time R would have been the little sibling at home. I don’t remember.

I hate not remembering almost as much as sometimes I hate remembering.

I have no great answer for what to do with difficult memories. Denying them is not healthy, nor is wallowing in them—although honestly, sometimes that just happens, they rise up like a blob and encompass me. This is what happens the day after scan days—I have to dig out of the morass of memory that rises up when we return to the hospital, we look at the brain tumors (which are all still there). 

Often I do that by writing. If I can put those dark thoughts/rememberings into the light, they lose some of their power…not right away, usually, but eventually.  And every time a new ugh memory pops up (that happened this week when a friend shared struggles her child was having in school—struggles that reminded me of some of the cruelty my own child faced in her middle school years), I try to give it light and then keep moving forward---not without the memory, but in control of the memory.  Sometimes I can use those memories to help others. That is empowering, too.

For all those women and men who are publicly dealing with difficult memories right now—stay strong. You are stronger than your memories. Unlocking dark memories and forcing them into the light gives YOU the power, not the memory.  Stand strong in your truth, and your memories become part of your power. Your memories and courage are helping others.

And I truly believe that in truth and power we find healing, and in healing we find zen. Memories are powerful, but they are OURS. We are not theirs. Working through memories is such a hard work – for me, especially with certain things (er, most things) related to my daughter, I still have so much work to do.  But once the memories are out in the sun, they cease to fester and poison my brain.

For all those brave, brave people forcing your memories into the sun…I salute you. And hey, maybe Andrew Lloyd Webber had it right…

Daylight! I must wait for the sunrise!

I must think of a new life…and I mustn’t give in.

When the dawn comes tonight will be a memory too….

LOOK, a new day has begun!

The Figure 5 In Gold

Today we said good-bye to beautiful Caitlin, that spunky bt friend we met in 2008. 
Nothing is worse than a funeral for a child.
Nothing.
Today, we remember and celebrate Caitlin. And for her, and for all our bt friends (and nf friends) lost, we will never stop fighting for a cure.

****************************************************************
May 22


2009

This was our mantra during this time: (borrowed from my friend Alice’s cb page for her bt hero, Lexie):

Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.

-St. Augustine

I generally had a tad more anger than courage, but the quote spoke to me.

In March 2009 we had another Coffeehouse for a Cure, by now it was an annual event. I made a slide show for that, it wasn’t perfect , but it was the best I could put together.

song credit, Sara Groves

G was thrilled, her favorite singer BESIDES Chris Rice was Matthew West, and he donated an autographed guitar for the Coffeehouse…which the winner then gave back to Genna.

We tried to embrace each moment, amidst normal kid sick and all the busy-ness of life. We attended RU Lacrosse games (loved loved loved that), went to Great Wolf Lodge with the kids, tried to just LIVE.

The entries from 2008 and 2009 are also marked by so many losses of brain tumor and NF friends…Hadley and Nora and Erin, so many others. We loved those children, even though we only knew them online, we loved them and deeply grieved their loss.

G had another neuropsych evaluation, a testing of cognitive stuff related to brain tumor injury…it went well, she was mostly stable or even a little improved from her first one. She was utterly wrecked about having to leave 5th grade and go to 6th grade, but we tried to stay on top of her therapy to help her with her anxiety.

That summer, Rosie turned 7; Genna turned 11; Andrew turned 14, and was going into high school.

We had always planned to have more children. Always. But with Genna’s diagnosis and the trauma of the years following (and the level of sick I get while pregnant—hyper-emesis for the better part of 9 months), we knew that possibility really was closed to us. As our baby got older, and G was off chemo longer (albeit plagued with constant issues), this reality made Dave and me both sadder. NF and brain tumors closed this door to us. That summer of 2009, I finally purged all the baby clothes from my attic.

And that is all I will say about that.

For the first and last time, G made it to 6 months between MRIs, but then her summer ’09 MRI was “stable but complicated”, so we went back to 4 month MRIs. Meh. Rosie was rock solid stable. During this time so many of our friends got really bad news…it was just so hard to bear, seeing everyone else in that awful place we knew so well.

G went to Ronald McDonald camp and got her hair cut…10” donated to Locks of Love. Yikes!

Before

After. She was So Pleased

And then it was the 5 year mark. Five years of fighting.

I know for some folks the term “fighting” isn’t their word of choice. For us, it works. This has always been a battle, and the image of fighting gives us a sense of empowerment, of some force in the face of the ultimate yikes.

To mark that date, I turned to William Carlos Williams, my favorite…

The Great Figure -- William Carlos Williams

Among the rain
and lights
I saw the figure 5
in gold
on a red
firetruck
moving
tense
unheeded
to gong clangs
siren howls
and wheels rumbling
through the dark city.

How do you hold 5 years in a few paragraphs?

There really is no good way. I’ve been thinking about this, thinking about the chasm between five years ago and now. Thinking with some dismay about how much I’ve forgotten, how much has slipped away of the 10 years BEFORE this day. Thinking about the ups and downs and the terrifying speed of the whole thing. It’s an uber-cliché, but the whole thing really IS like a roller coaster that never ends…and this week, strangely enough, I’ve been having some insane vertigo issues (just an inner ear problem, apparently), so I actually FEEL like I’m on a roller coaster.

But really, among the rain of the hard times and the lights of the beautiful people we’ve met, the doctors who saved my child again and again, and the wonderful organizations that made my Genna smile…the figure 5 in gold moves…

Five years is a wonderful/terrible milestone.

If Genna’s tumors were gone, we’d say she was at the magic 5 year remission mark. But we know in NF that’s not how things work. With NF, the tumors are still there, quiet now, but the gong clangs and siren howls do rumble somewhere, if only in the darkness of my maternal heart.

With every scan that emergency looms, that firetruck comes tense, if never unheeded! With every weird headache or crazy day, I feel the reality of 5 years of accumulated yikes.

For G, 5 years is a remarkable achievement, and a blessing. She fought hard, and for whatever reason she has made it five years. So many of our friends from the very beginning—friends who also fought so long and hard-- haven’t…

“… wheels rumbling
Through the dark city”…

Hadley…Nora C.…Sandra…Timmy…Emma…Nora U…James…Justis…and more friends, more angels as the years go on…Kyle, Jessica, Dakota, Ryan, Erin, all the names in my little list above times 5.

“the figure 5/in gold”…

We’ve earned this 5 years of Survivorship pin, but it comes inscribed with the names of all of our friends and the children of our bt/nf community who have ended their battle here. That’s a painful inscription, and I would dishonor these kids if I didn’t acknowledge that.

At the same time, I celebrate my Genna, and who she is becoming…from a terrified (and Very Strong Minded) six year old to a vivacious (if still Very Strong Minded) 11 year old…Genna is funny, compassionate, helpful, enthusiastic, and sweet. She makes me crazy about 6 times a day, and makes me better another half dozen times. She sings little songs and hates hiking just as loudly. Genna is curious and diligent, ocd and a worrier, loving to little kids, engaging to adults.

Is she like this Because of the last 5 years, or in spite of them? I don’t think we’ll ever really figure that out. But either way, the figure 5 in gold is hers today.

And for Andrew and Rosie, whose lives were turned over by the last five years…I am sad/glad for them, too…glad for the blessings they’ve shared, sad for the Mom & Dad they sometimes kind of lost in the crazy of the last 5 years. They’ve earned a sibling “5 in gold”, too…just like so many other sibs of kids with catastrophic illness. They are the unsung victim-heroes (not necessarily in that order) of this journey.

Our lives changed forever, in ways far beyond medical, on August 30, 2004. Dave and I are not the same…we are older, obviously, but again, in much more than years. My heart feels like it’s 400 years old sometimes. We are still trying to figure out what we’re supposed to DO about all this, how we are supposed to help good come of this. For every child with a catastrophic illness brings good to those they meet…they are KIDS, not saints, and the inherent dignity and beauty of a child is focused in the struggle for life and death.

We are off to Hersheypark today, a fitting place to mark this moment, even if I have no energy…certainly better than being in our house, the shadows of diagnosis day still lurk in corners on August 30. We will eat chocolate, swim in an over-chlorinated hotel pool, and look for the giant walking Reese’s Peanut Butter cup guy. We will LIVE today, NOT five years ago, even though I know that will require much effort. LIVE Today. Because Today, even if it’s a hard day, is worth celebrating.

We will honor the 5…take a deep breath, and begin the next 5…10…50…

scan day.

And we try to. Dave & Andrew ran again for NF Endurance in Philly that fall…we went to more lacrosse games, I returned to work for the first time in 10 years VERY part time, and we lived. But the shadow was always there.