Wednesday, May 16, 2012

Lessons from Leukemia

"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage." -- Lao Tzu

So...I can't help it.  I try...honest I do.  I start the month of May and act casual.  It's normal.  I'm normal.  There aren't any shadows, memories or lingering effects.  My May baby is talking about birthday parties and cupcakes and butterflies.  Leukemia is behind the scenes.  It's an undertow, just waiting to carry me out there -- to the place of diagnosis, chemo, spinal taps, and children suffering through something they shouldn't even know about.  It's a weird paradox of hope and healing and futures stolen, childhood cheated.  It's not my reality any more so I should be able to shake it off.  But because it was once part of my life, every calendar cycle my psyche somehow needs to bear witness once again.

This time, it began with an innocent phone call and a friend telling me how she couldn't sleep that night because she was filled with worry.  Her worry wasn't life altering or even all that crucial so she was examining herself like a specimen, mentioning that the older she gets, the more she worries.  I told her that some of the remnants of surviving leukemia with your child are the lessons you learned and for me, learning not to worry was at the top of that list.

So, in order to make sense of that 1,000+ days, here are some of my lessons...

Worrying Does No Good
Trust me when I say that if I could have worried Patrick's way back to full health it would have been over in minutes.  Every blood draw I would sit for half a day waiting on the results, worrying and toying with the big questions of life. The pit in my stomach always present.  After months and months that turn into years and years of this, I finally fought with myself and wrestled with the angels enough.  I learned the hard way that worrying does no good.  It steals the moment -- the precious present. And here's the obvious: that's all we have.  All those half days I could have been reading to my toddler, hugging, painting, dancing, singing and stroller-riding about town.  Those irreplaceable moments are gone.  Worrying didn't change one thing.  I've learned my lesson for the most part.  I really am not a worrier anymore.  I focus on all I've got -- this minute with the people who are right here right now.  The story is going to play out the way it will -- why waste the day with worry?

Music Helps
Those annoying teen-agers with the Ipods stuck into their ear canals know a secret -- music helps.  It can be the anthem that powers you through another nightmarish procedure.  It can be the tender melody that envelopes you in a curtain of healing.  It can be the angry rocker that lets you kickbox your way out of the crapper. However it works, music is a salve.  It saved me and Patrick day after day for over three years.

Head to the Beach
When all is going downhill, head to the beach.  The rhythm of the ocean -- the steady ebb and flow never failed to remind me of how much bigger this world is than my small problems.  The back and forth and give and take of the tides echoed the tides of my life.  I could breathe here.  I could let Patrick be here outside and neutrophils and compromised immune systems didn't matter.  The ocean was bigger than the both of us.  It was bigger than cancer and leukemia and sad stories.  I could watch that never ending out and in and find comfort.  Sorting through the stones, digging in the sand, feeling the ocean baptize me in its vastness cleared my head and strengthened me.  Best of all, it gave Patrick a chance to play.

You Want To Be Pissed About Traffic and Bills and the Ant Invasion
If you just got a bill in the mail, if the price of gas is ticking you off, if the ants have invaded and because of that you've lost your noodle, damn you're lucky.  Those are the problems we want to have.  The annoyances of life are part of the deal.  Being able to muster up the energy to get royally ticked off at those things means that your life is pretty great.  The first time I noticed myself freaking out about the traffic post-leukemia I stopped in  I was shocked and delighted to find myself back in the land of the living...where things like that matter.  When you are dealing your child's  life threatening illness, that stuff gets tossed out with the trash.  You watch people and notice their irritations and dream of difficulties like that.  Yes, I'm telling you that you should smile if you can't find your keys and it's driving you crazy.  You are lucky!

What Doesn't Kill You Makes You Stronger
Yes, that bothersome quote that everyone tells you when you're going through hell is true.
Surviving your greatest fear puts a lot of things in perspective and it sure does make the sweet moments all that much sweeter. 

***Thank you to Chris Rumble (along with Seattle Children's Hospital) who took his terrible diagnosis and made this magic video happen.***

So go out there and kick some bootie.  Today is the day to make your dreams come true, eat your favorite food, dance, sing and snuggle with someone you love.  

Here's to Patrick and all of the kids who have battled too soon, for too long and with so much heart.
You rock!

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