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.