best gift ever

When people asked me what I wanted for my birthday this year, I mentioned a couple things like a cool hat I saw online or a pair of new shoes.  From the morning the sun peeked through the windows this morning to this moment as I fight to keep my heavy lids from closing before I'm done with this post, I have had a beautiful, special, noteworthy, loving birthday.  The kids were thoughtful in their gift shopping and doting in their care for me all day and night.  Mike arranged for a pizza dinner at home with family, and it was fun and funny, and it was, as Dylan said, "...an awesome party!"

The sweetest gift came last night though.  I took several of the kids to a certain favorite trendy has everything you could ever want under one roof superstore, and we saw back to school clothes and supplies.  Yes, it's July.  Yes, it's early to think about going back to school, but we were there...and the store was quiet...and we had a couple bucks in the checking account this week...So we shopped for school.  Nick got excited and picked out a big pile of jeans, and shorts, and tees, and we headed to the fitting room.  A couple items were a tad too long or a little bigger than perfect for right now, but I said things like "You'll grow into that." and "It'll fit in a couple months."  Grinning like he just won the lotto, Nick headed out of the dressing room and toward the checkout line feeling good about how he would look on his first day at his new middle school.

Then I realized...I realized that we went through that whole exercise without me thinking about keeping shopping to a minimum in case he was too sick to go to school, or worse, died soon.  For over 3 years, the "what if he dies?" script has run through my head in every situation.  He should spend his Journeys gift card now in case he dies before he can use it all up.  We shouldn't buy more than one set of PE clothes in case he dies and obviously can't go to school anymore.  We shouldn't buy too many expensive shoes in case he dies and doesn't get use of them all.

Even after treatment.  Even after many "clean" MRI's, the script, the fears, the heartache...They flooded my head and my heart in almost every situation involving decisions about the future and how much to invest in Nick's.

Last night, we just shopped for the school year ahead of us.  I didn't think about cancer or death or not having the chance to grow into those jeans.  That moment of peace.  What a gift.  The best gift.  I'm not naive, and I know the cancer could come back.  I know this soul stillness...this glimpse of the old normal vs. the new normal we had to get used to during cancer treatment...could be fleeting.  But for right now, I am celebrating both the gift of another year of life and the best gift of all...a peaceful soul, and quiet heart, and the hope, the hope we all have right now for great things to come...

 

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.   

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.  

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...