with and without

More often than I share here, my emotions swell until I feel the stitches that bind me straining and stretching and aching for some relief.  If I weren't afraid, I would let my feelings leak and ooze into words, into this blog, into something that feels like sense and logic.  I would write and write and write until I felt some relief or stumbled on some clarity.  But I worry.  I worry that if I only write about negativity that is nagging and churning, that someday the writing will be the only thing my children and my children's children have to remember me by, and what they will know of me will be dark and one dimensional.

I've realized that happy grows slowly, glimmers from under covers and peeks around corners.  Rarely, does joy appear and then grow and then stay in quite the same heart racing, ears pounding, stomach clenching way that pain or fear do.  Joy doesn't knock tenaciously on my brain, begging me to write it's story, the same way pain does.

I apologize.  I apologize for not sharing more.  I apologize for long absences when I am afraid to cement for posterity the darkness I am experiencing.  I apologize for being so inept at capturing happiness and love and lightness in words but so proficient at capturing and describing beasts and terrors. 

As I ramble now, I know I've already deviated from the path I thought this entry would take, but isn't that how my life seems to go?  Seems to be God's little entertainment sometimes...to watch us make plans knowing so many of them will run off the rails before they have a chance at all.

For the first time in 20 years, our family is without a home.  We have a roof, but we don't own it.  We've lost our money.  We've lost our confidence.  We've lost things we never had like our ideas of the future, security, retirement.  We've lost our way, and we've lost our security, or at least the façade of and belief in security.

Following a stress induced physical breakdown this summer, I've even lost my food.  Being forced into a gluten free, dairy free lifestyle took away one of my lifetime crutches.  Yes, I can eat, but I can't eat mac and cheese or a pizza at the end of a long day like I used to.  Having battled eating disorders and weight issues all my life, food was big for me...a relationship all it's own...One I've had to break off as I face a lifetime of eating more like a cavewoman than a modern American carb lover.

We are without a lot of things.  Things we miss.  Things we mourn.  Things we want back.

As we've traveled with cancer these past few years, we have met and loved and prayed for many children.  Many parents.  We have cried as babies died, and their mothers and fathers crumbled, wishing they could go in their place...or go with them.  Every remission, every relapse, every loss is another stabbing reminder to fear the monster.  Every day with Nick is a reminder to turn our faces to God and thank Him for one more day, one more chance to love him and be grateful for the grace of just one more day. 

For the past week, Nick and Krissy have been traveling in Canada with my parents, and I miss them, I'll be honest, especially Nick, much more than I expected to.  When my healthy kids travel, I worry and wonder about them.  When Nick left, it felt like my right arm got ripped away from my body.  This little person I have protected and fought for and guided and loved with a fierceness I didn't even know I possessed, was in someone else's care...Not for a few hours during the school day or for a sleepover at his friend's house...His life was now in the hands of my parents and every airline pilot that would fly him, taxi driver that would drive him, stranger who would cross his path...His life was not my responsibility this week.  His life was not breathing and beating next to mine this week.  And in my yearning to feel him near me, to hear his voice, and see his sarcastic little grin, I know in the truest way, I am without nothing. 

If we are all alive, our family is not without.   

And there, right there...did you feel it as it sprinted across the moment?  Joy.  It's there, woven into our story and the stories of all the other families who have gone through childhood cancer. 

People don't always like to read our stories or even look into our eyes because they fear the pain, but if we, especially the parents of children lost, could find the right words, we would ask everyone to please know that during the cancer journey, it's not just the pain and fear that amplify;  the love and the joy and the poignancy in small moments does, too.  I would ask the general public as well as all my future relatives who may only know me through my writing, please see the love, and please remember the joy (even when we can't express or explain it as thoroughly or as often as we do the ugly parts).  Please see our child, or remember our child, and their happiness and their love...not just their cancer.









  

dream.

As I sat in the bleachers of the Del Mar Fairground with Krissy, the ride lights glowing in the infield and a Pacific breeze blowing just cold enough to raise the hair on our arms, I knew I had to write this post.  A 12 year old with dreams too many to fit into 5 lifetimes sat next to me as an inspiring artist serenaded me.  Martina McBride sings songs that speak to your inner self...The little lady who sang to a hairbrush in the bedroom mirror, wanted to run for president or fly to the moon, believed that she could, believed that she would...

During the concert, Martina said that all she ever wanted to do was sing.  Singing, besides margarita making, is the only talent she has she said.  I can only imagine what an uninterrupted dream feels like.  Dream it.  Work hard.  Achieve it.  Such a simple concept.  Such an impossible reality for most of us.

Growing up with a mother whose own journey led her to crave boundaries and boxes, consistency and predictability, created a lot of confusion...for both of us.  I wanted to dance, write, create, express...I wanted to feel the freedom that only releasing my creative beast could give me.  She wanted to cage the beast.  Not kill it.  It was OK for the beast to exist in the world as long as it was locked up and placed a decent distance away, so we could all stay safe.  My beast could not stay away, and instead of being trained in useful ways, it often roared in anger and created chaos in our home--Her home.  Her clean, careful, safe little home.

Trying to repress and behave while living with a wild, creative heart and mind made me feel guilty and bad and wrong, and I often acted bad and wrong and developed illnesses like eating disorders and smoking cigarettes or drinking too much.  Even when I was strong on the outside, or professional, or studious, I was sad and confused and uncertain on the inside.  Even now, I can't define myself and my gifts clearly because I didn't explore them fully through childhood and beyond...never believed in them completely.  Which  talents are good, acceptable, allowed?  Which gifts are unworthy, embarrassing, worthless?

When I danced, I felt it.  Freedom.  Belonging.  Love.  My story.  My self.  It was OK to show it.  Ok to live it.  OK to be it.  Spin and roll and leap and FEEL.  My real home, wherever the studio or stage was.

As I've aged, I've tried to allow the dreams to sneak past the prison bars.  They're tempered by time and experience now, but they're unashamed.  Somewhere between childhood and nine kids and brain cancer and now, I found the permission slip to let them run, and I signed it myself. 

More than anything in the world, I want my children to feel that wind of creative power blowing on their faces.  Feel that the world can't offer any obstacle they can't tackle.  Some will sing.  Some will write.  Some will heal.  Some will dance.  But I want them all to dream their dreams and believe in their possibility with passion and clarity and faith.

I want to be the runway, the flight path, not the prison bars.  Although, I fear all parents create suffocating cocoons to some extent.  Dream babies.  Dream.  Dance.  Fly.  Believe.  You deserve it, and you're worth it.

P.S.  Remember, it never hurts to learn how to make a margarita, too!  Sometimes, the road gets a little rough, and you'll just need a drink. 

smudged.

Today I smudged.  It wasn't the first time, but it was the first time in this home.  If you have no idea what I'm talking about, don't worry, I didn't even know the technical term for burning sage until a week or two ago.  Years ago, we traveled to Sedona, AZ, and being the shopper I am, I stopped at every roadside stand, suddenly infatuated with bears made from turquoise and worry stones and bunches of dried weed.  Of course, I had to ask about the weeds I was seeing everywhere, and it was explained to me that it was dried sage.  If you burn it in your home, it's supposed to clear negative energy and spirits from your home.  The negativity attaches to the smoke then wafts away as the smoke clears.  (Here's an article about smudging if you want the long version of the practice http://www.spiritdiscovery.com/smudge.shtml)

Coming back to San Diego with my sage bundles, I smudged the next 3 houses we lived in.  (The last house on Elk Grove, I should have smudged daily...times 10!!  Maybe my negligence explains all of our bad luck there!)

Hard to admit in some circles, but I watch Long Island Medium...often...I've even seen Theresa Caputo live at the Civic Theater.  Even though she says the same things over and over again, there's a piece of me that believes in her powers to summon "spirit" enough to keep watching.  And Theresa smudges...a lot.  I saw her smudging her house on a recent episode and immediately hopped onto the computer to order a new bundle of dried sage for our home. 

Dylan told us last week that he saw a red clad figure sleeping in our bed.  When he tried to wake it, it disappeared.  Other children have told us they have heard or seen strange activity in this house, too.  We know a former tenant passed away from scleroderma.  I'm not sure if she died in the home, but I wouldn't be surprised if the landlord failed to mention that part of the story to us.  And I wouldn't be surprised if she's still hanging around...Probably quite disturbed by a loud house full of 9 children!  I was definitely hoping the sage would help her move along with her eternity.

As a family, we have a lot of emotional and financial damage to repair in the aftermath of Nick's illness.  It's time for some new energy, some positivity, some cleansing and restarting on the "right foot." 

So I made our house smell like an old stone lodge today.  I prayed over that burning bundle.  I waved it over my head and body.  I waved it, scattering burning embers onto beds and carpets and many other things that are highly flammable, and I prayed about all the things I want to let go of.  I swept it back and forth over every bed as I thought about the family members who sleep there and how much they deserve to heal and to thrive.  I stuck it into closets and showers.  I even let the smoke fill my car for a moment as I smudged the garage.

Sage may or may not have a real power to cleanse, but the ritual was one I would like to repeat regularly!  My kids would prefer if I just pretended to light the sage from now on because they all think their rooms "Smell like butt!"  Just taking a few moments to focus on letting go of negativity in my life and letting in positive energy made me feel lighter, more optimistic.  I don't know why  I carry my hurts and worries for so much longer than anyone else would or should.  On too many days, my heart hurts, my brows furrow, and  my neck tangles into knots.  That's not helping any situation...not healing...not mending...and yet I can't let go.  Somehow, the physical waving around of this smoky stick while I considered releasing these long held burdens, facilitated that release...made my head and my heart open just enough to let some of my wounds and worries flutter out.

Every New Year's Eve, we perform a similar ritual when we write on little slips of paper what we would like to let go of from the previous year then burn the papers to ash and throw them away into the middle of the road at midnight.  For a little moment right there at 12:00, we feel invincible, untouchable, ready to take on the next year, our future, with strength and renewal.  There's no reason to limit renewal to only one night of the year.

Some of the kids swear they already feel better in our house.  Others are probably tweeting their friends about what a lunatic hippie mom they've been stuck with.  I'm going to stick with smudging.  I like being smudged.  It sounds dirty, but it feels clean...and new...and hopeful...

fragile.

Every three months, Nick has a brain and spine MRI.  The scan itself isn't too tough to go through.  He puts on special goggles that allow him to watch a video, has a warm blanket pulled up to his chin, then slides peacefully into the tube.  After an hour or so of listening to the "bang, bang, bang" of the MRI machine, we thank the staff and go to Target to get him a toy. 

It's the waiting.  That's the hard part.  For the better part of three months, we enjoy Nick's good health, and his almost perfectly normal mental and physical capabilities.  The fact that he outwardly appears so perfect makes it easier to pretend he doesn't have brain cancer...Makes it easier to push back the tears and the fear...But when it's time for that MRI, it all floods back to us.  If those scans come back showing evidence of disease, we know the worst is coming.  We know relapsed medulloblastoma is terminal.  We know the hospital stays, clinic visits, pale skin, and bald head become our reality again...Only this time it would be to buy time, not with the hope for cure we had the first time he battled his disease. 

It's hard to breath...hard to speak...hard to answer the people who ask every day if we've gotten the MRI results back...For days, sometimes a week, we wait, pretending to be like everyone else.  Just going to work, running errands, getting gas or groceries...The truth is, I can hardly think or feel anything other than anxiety during those days.  I check my phone every minute or so to make sure I haven't missed a call, but when the call finally comes, I don't want to pick it up. 

As soon as I hear the cheerful voice of Nick's case manager, Gail, I know his scans are clean.  I know that she either wouldn't be the one calling, or at least wouldn't be sounding so upbeat, if the news wasn't good.  The way she says "So Nick's scans were stable..." in such an unremarkable way...The way that statement rolls so smoothly into "We need to make his next appointment..." always surprises me a little.  I kind of think there should be a big, dramatic pause after hearing that his scans are clean...Balloons and confetti should fall from the sky in celebration of the good news, but she just moves on to scheduling his next blood draw or port flush...

The truth is, her statement should be "Nick's scans are clean...for now..."  As cliché a it sounds, cancer patients and their families don't put too much expectation on the future or even take for granted that there will be a future of any significant length of time.  We relish the beauty in the right now, and celebrate the tiniest of accomplishments with intensity.  We live, but we live with the knowledge that the victory of a clean scan is a fragile one.  There is no finish line.  There is no trophy we put on a shelf to get dusty.  The cancer will never be a memory.  It's more like a shadow or a cloud that hovers close.  Every day.  Forever. 

One year and one day ago, the world lost a precious boy named Connor.  Cory and I became friends with Connor and his mother, Linda, during his battle with neuroblastoma.  He was effervescent, and his mother was brave.  They were both strong, but the cancer was stronger.  Celebrating the one year anniversary of his death with a celebration of his life yesterday, was powerful for me.  Hours before, I had been in the doctor's office with Nick discussing the fact that he's had clean scans for a year past treatment, so now he can get his port removed.  His doctor looked fascinated by his head of hair, bright eyes, and obvious good health.  Such a joyful sense of relief followed by such a powerful reminder of the potential for loss we will always face. 

Nick's cancer could come back.  Or a secondary tumor could grow as a result of the radiation he received.  Or he could develop leukemia from his chemo treatments.  That's not drama.  That's the risks...a few of them anyway...that are his reality.  Our reality. 

And I could get cancer tomorrow.  Or you could get hit by a truck.  Nick's scans bring to the forefront of my mind how fragile his life is, how fragile these victories are, but we are all fragile.  If we make it through each day safely and with our health intact, we should all be grateful.  In some twisted way, I feel grateful for these scans every three months because I have to face our human condition more regularly and in a more tangible way than most people ever do.

When I hear songs that say "Live like you were dying,"  or slogans like "Live Like Connor" or "Live Like Bella" to encourage people to live as fully and with as much enthusiasm as young cancer patients, I understand.  I wish I didn't.  If I'm being honest, I wish I didn't really have a firm grasp on the concept of how fragile we all, our children included, are.  I can only hope that I, and all of us who have been given this gift of insight and wisdom, are able to be stronger than our fears...That our fears and the sense of urgency they create in us will propel us to love and help and accomplish more than we normally would have.     

Tonight, I cannot celebrate a forever victory, but I celebrate Nick's small, fragile, one with joy and gratefulness...And I thank Linda for sharing Connor with us and for continuing to be such an inspiration.
 

hope.

I have struggled for weeks to write.  As Nick's two year anniversary of his diagnosis approached, was "celebrated," then passed, I wanted to write...I wanted to scream...rejoice...cry...grieve...dream...I was just paralyzed with emotion.  I had days when I couldn't catch my breath.  I used to do that as a child.  Once, I made my mom take me to the doctor because I thought I had a medical problem.  I didn't have asthma or any other breathing disorder.  It's a feeling disorder.  When I feel too much, my lungs won't fill with air, and that's how the last few weeks have gone...

Of course, my life never affords me the luxury of a singular focus, so while I was processing my PTSD over Nick's cancer, I was also welcoming artists and new decor and new employees and new products into the store.  For a few precious moments, I felt blessed with boundless possibility for the store's success and the blossoming relationships I was forming. 

As the anniversary passed, I felt it in my home life, too...I had some days when I remembered who I used to be and how I used to feel.  I haven't always woken up with a vice pressing the sides of my skull in on my brain.  I haven't always let "what if" stop my planning and dreaming. 

As today unfolded, it went from bad, to worse, to devastating...I wanted to come here to vent.  I wanted to whine about people letting me down and cutting me down and being careless with me.  I wanted to document my pain, my disappointment, my confusion...My "why????"

Driving down the 56 freeway tonight, a slogan jumped into my head like a blinking billboard or a song that got stuck on "repeat" in my head..."Choose Hope."  Hope.  I had so much hope, but all the hopes I had nurtured in the past couple weeks had crumbled into defeat today.  "Choose hope."  I did!  And I lost.  I put too much hope in the wrong things and the wrong people, and I was feeling sad.

The funny truth is, as Alexander Pope said, "Hope springs eternal..."  Tomorrow, I realized, I will find, without having to search for it, something new to hope for.  God gave us humans a gift that is endlessly renewable.  No matter how big or small our lives are and our possibilities are, we hope for something good.  We hope for peace.  We hope for wealth.  We hope for love.  We hope for better...better than what we know...better than where we are...better than who we are...For now, I just hope tomorrow is better than today, but I am heading to bed with a sense of gratefulness and wonder for this endless portal to possibility.   

smile.

Something about today was just off.  Maybe the gloomy weather.  Maybe the alarm going off during the wrong part of my sleep cycle.  Hormones?  Who knows?  It was just one of those days when I wished I could just crawl back under the rumpled bed covers and let the world spin on without me.

But, I had those sweet babies hugging my knees and looking forward to the magical possibilities they believed today would hold.  I had no choice.  I had to get up and be mom...And I had to smile.

No matter how I grumbled and fussed around this morning, Kensie followed me around like a puppy, kissed me, laughed at me, made me smile.  I wondered out loud how and why she would want to love on me so much when I was feeling so unloveable...Cami said "Because she knows she makes you happy." 

I so hope that's true.  I so hope those babies, all 9 of them, know they make me happy.  Every day.  I will smile when I am happy.  I will smile when I want them to think I'm happy.  I will smile because I want them to be happy.  When in doubt, smile.  Love.  And smile.

release.

Grudges.  Shoes.  Poisonous relationships.  Memories.  Nail polish.  I'm not discriminating.  I just have a hard time letting go...of anything.  Maybe a side effect of my childhood, or maybe just a loose wire upstairs... I may never know why...But I hoard both actual objects and emotions.

We moved last month, and I'm having a tough time organizing the new house.  My closet looks more like a department store stockroom than one woman's closet, and I wear approximately 1% of what I have stored in there.  I studied the racks today and considered getting some trash bags out to get a generous Goodwill donation together.  Then I got sidetracked because I started moving boxes around the bedroom and trying to figure out what we have in those boxes, why we need them, or whether I can get rid of any of it.  Shuffle it around and make excuses to hold on.  My specialty. 

As I stumble around my things, and I stumble around my life since Nick's cancer first gripped it nearly two years ago, I almost audibly hear the word "release."  Release the things.  They only clutter my life.  Release the fear.  It only blocks my path to faith.  Release grudges.  Holding grudges and being angry only takes time and energy away from building strong relationships with the many great  people in my life who deserve my time and energy.

Cluttered garage.  Cluttered closet.  Cluttered heart.  It's confusing, hard to move around, blocking the path to where I really want to be.  I must release.  I will release.  I will move forward.

I have a lot of little people watching me, learning from me, repeating what they see me do...And I can't imagine any of us, especially my little ones, stopping right here today.  We all need to dream.  We all need to love.  We all need to release the anchors, so we can fly.  

2011

I originally posted this on New Year's Eve, 12/31/11.  I wrote it as our friends, the Vargas', arrived to celebrate a new year coming...a new chance at happiness and prosperity...Their beautiful daughter, Tiffany had battled leukemia for years, and their financial situation had become desperate.  We all toasted and prayed for a new beginning that night, but stupid cancer appeared in Nury, Tiffany's mother.  On Christmas Day, 2012, with Tiffany in remission, her mother was lost to cancer.  Somehow, this feels like an important post to pull first from the archives, so here you go...

As I count down the final hours of 2011, I feel compelled to address all the previous hours somehow...wrap them up in a meaningful package...make sense of them..So painfully obvious is the fact that there is no sense in what we have faced and fought and endured this year. No sense in what we will continue to face and fight and endure for many years to come. In 2011, Nick, our handsome, athletic, intelligent son was diagnosed with brain cancer. Brain CANCER. I still have to say it over and over to try to grasp that, and yet, it still doesn't seem entirely real. I heard the words in the hospital. I laid with him in his hospital bed and swelled with pride and awe when he told me "I think this is a life changing experience, but I'm strong." I've driven him daily to 6 weeks of radiation. Held him down in clinic to have his port accessed while he screamed and twisted away from the pain. I've listened endlessly in clinic while other children wail against the needles. I've endured the torturous waiting for MRI results and slept too many nights in a hospital chair while the poison that may cure him pumps through Nick's veins and makes him sick. He IS strong. He is beautiful. He is my inspiration every day to do more and be more than I ever thought I would have to be. Also, in 2011, my best friend from high school, the mother of 3 small boys, found out she has an aggressive form of breast cancer. She's endured a mastectomy, chemo, baldness, fear, pain, but somehow, she's courageous and funny, and ironically, the former hair model is gorgeous as a baldy! In 2011, families lost children and mothers and fathers to cancer. Many more of us have lost our incomes, even our homes, as we try to contend with the rigors of cancer treatment and the mounting medical bills, prescription expenses, babysitting fees, traveling expenses...All of us have lost our innocence. Up until the time you hear CANCER as it applies to you, you innocently believe there will be tomorrow, or next week, or next year to make amends, be a better friend, work, love, live. Once you hear CANCER, nothing is sure or certain. After you hear CANCER, you lose friends. You gain friends. You learn to surrender pride and accept that this is your season to take and be tended to. You learn who will be your givers and who were just takers all along. That surprises you. You lose who you were before you heard CANCER. You have to figure out who you are with cancer...and hopefully, after cancer. You celebrate small victories and move from day to day in grateful celebration that you are there...just that you are there to see today...There is beauty in having a stripped down life. There is beauty in strength and courage. Cancer sucks, really sucks...robs your life of so much even if it doesn't steal your life completely. But as we are slowly learning, it also reveals some glorious and generous people, new relationships, appreciation, and a level of faith that we may not have enjoyed without the cancer. 2011 was the worst year I've ever endured. 2011 was the worst year our family has endured. But it wasn't all bad. And it can't be summarized, packaged up neatly and put away on a shelf. It's a "to be continued" episode...right into 2012, 2013, and beyond...We welcome 2012 with hope and faith and love and a resolve to continue fighting cancer and it's collateral damage in our lives and the lives of anyone else we are able to help.

Chasing Happiness

The day Nick was diagnosed with cancer was the day my life went from full color to black and white.  Already a fairly serious person, prone to perfectionism and cynicism, I never lived a caution to the wind, Rainbow Bright, carefree type of life, but in contrast to the darkness cancer brought, my old life feels like unbridled bliss. 

Cancer brought fear like I've never known and am still afraid to look square in the eye.  Cancer exposed me to emotional and physical pain I had spent a lifetime trying to avoid...Nick's pain, my pain, my family's pain, and the pain I witnessed in other patients and their families.  Pain that took a lot of courage to expose in my blog entries here.  Pain I chose to put away again after months of writing.  I don't remember what prompted it, but I stopped writing and pushed "Revert to Draft" on every one of my blog entries.  Maybe a part of me thinks that if nobody can see it in print, it will go away.  I don't know if or when I will publish those old posts again, but I do know I miss the cathartic effect writing has on me.  So here I am...back to the blog...

We're now 8 months post treatment.  8 months of clear MRI's.  8 months of trying to find our way back to a "normal" life...Only this attempt is amidst serious financial trouble and the ever present awareness that the cancer cloud hovers not far above or behind us.  Will the cancer return?  We don't know.  How do we plan lives around that type of uncertainty?  Maybe the way we all do...None of us really know what challenges we will face tomorrow or the next day, yet we dream and plan...We all know we will die, but we continue to live.

Lately, I've noticed the sun shining more often.  I've seen the colors in flowers.  I've had a few clean, clear breaths of fresh air fill my lungs and joyful moments fill my heart.  The light is pushing back on the dark now, and I appreciate the times I feel gratefulness, hopefulness, and most importantly, faithfulness.

  
I've heard it said that faith and fear cannot co-exist.  I consider that constantly, and I do believe that's true.  During Nick's treatment, I tried desperately to hold onto my faith, but I was mad at God.  I doubted his plans, and I feared what cancer would do to Nick.  I don't like being a fair weather fan.  I struggle...a lot...with the way I wavered in my faith.  My faith journey is just that...a journey...with some more bumps in the road than others maybe...but I'm still working on it...Still journeying toward stronger faith, deeper love, and someday, maybe, happiness as a rule rather than an exception.

Our enormous Pacific Ocean.  This was tonight's sunset in Encinitas, CA. 
This is where I feel the most at peace and where I'm reminded who is really in charge...