mixed up.

"Happy 3rd Birthday Nick!"  We said that over and over today.  We had Nick's friends and family over for swimming and pizza.  I posted on Facebook about how happy we are today.  Because three years ago today, March 9, 2011, was the day we found out Nick had cancer.  He has survived for three years past that moment. 

And we are happy.  We are happy that Nick is still alive.  We are happy that he is cancer free.  We are.  So happy.  So f*%#ing happy to be "celebrating" a holiday we should never have to "celebrate."
 
We are intelligent people.  In good, strong moments, we understand that we are the "lucky" ones.  We know, there are many, many parents who are not hosting survivor parties but rather grieving the loss of their precious babies.  We are grateful to hold Nick, full of life, cancer free Nick, in our arms every day.  We are very, very grateful.

But Mike and I both had anxiety and anger attacks today...separately.  It was good when we came together for a moment and said "you, too?"  Because sometimes when you're supposed to be something, and you're pretending to be that thing...But your heart is feeling differently, it feels lonely.  It feels like you're doing something wrong. 

March 9th, 2011 is a day I want to curse.  I want to blow up.  I want to scream at and shoot at and stab in the heart.  I don't want to celebrate it.  It was the worst day of my life.  I remember hearing that my 8 year old son had brain cancer.  I remember calling Mike, my parents, my other kids...hearing their horror and their voices crack as they cried.  I remember how sick my tiny boy looked in that hospital bed.  I remember explaining to him what a tumor was while carefully leaving the word "cancer" out.  I remember willing every nerve in my body to turn to steel, so I could smile at Nick and tell him "I'm so happy they finally found out what's wrong with you, so we can fix it."  I had no idea if he could be fixed, but he was going to see strength in my eyes and hear power in my words.  I remember getting him the stuffed panda he wanted from the gift shop and how he hugged it and slept with it.  I remember crawling into his narrow bed with my enormous pregnant body, so I could hold him while he slept. 

I remember every moment of March 9th, 2011, and every March 9th takes me right back there.  It's not the same as a "real" birthday when you remember the happy delivery room scene.  New life.  Hope.  So much joy.  We call today a "birthday" for Nick, but it's not the same...at all. 

Instead of skipping through the grocery store as I bought party supplies, I felt anxious and confused and like I wasn't capable even a little bit of hosting a party today.  Once I got to the car and started driving, all the "wrong" emotions flooded my heart.  At the moment I was supposed to be heading home to celebrate Nick's life, I was spilling tears over the brokenness his cancer caused.

I'm mad.  I'm mad that innocent children get cancer.  I'm mad that mine did.  I'm mad that Nick's cancer took his athleticism and his energy.  I'm mad that his grades are slipping, probably from his radiation treatments.  I'm mad that he can't grow.  I'm mad that I have to stick him with needles full of growth hormone every single day to try to help him grow.  I'm mad that his cancer broke relationships with people I cared about.  I'm mad that his treatments cost so much financially.  I'm mad that his siblings worried and cried and lost opportunities in their lives.  I'm mad that three years later our lives are still unstable.  I'm mad that even as we rebuild, it feels like building on quicksand.  I'm mad that we spend every day looking over our shoulders, worried that the cancer will come chasing Nick again.

Is that wrong?  Should I take Prozac?  Push the "wrong" feelings away into some vault in my heart?  Do other people's lives really look the same in real life as they do on Facebook?  Do other people only feel "right" feelings?  Or is it normal to have mad and sad living alongside grateful and hopeful inside yourself?  Right or wrong, today, it all lives in me.  Smiles in me, cries in me, laughs in me, and rages in me.   

No cancer mom looks back on the day her child was diagnosed with joy.  No memory of that news and that day in her life is anything other than traumatic and terrifying.  But Nick is watching me.  Just as he was in that emergency room 3 years ago.  Every March 9th, I have a choice.  Show Nick the tears or show Nick the strength.

Nick saw no tears today.  He saw smiles and people who loved him and treats and presents.  He heard how very glad we are that he is in our lives.  He heard how proud we are of his courage and grace.  He is our amazing gift, and he will always deserve the best version of me I can show him. 

Why do I still feel like crying?

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.









  

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.