Choices

There is something I have thought a lot about as I've dragged myself, with lead feet, down this worn path I thought we'd escaped. When we got our first real answer that the spot in your lung was cancer--and your treatment would include a year or more of chemotherapy requiring a hospital stay of 3-5 days every three weeks--and my gut was wrenched from my core, I recognized it's existence even if I didn't want to acknowledge it.  But when we made that first trip to be admitted for a week for your first cycle of your new regimen and I saw the battle-worn parents around me, I knew that our survival in all of this was going to be about choices. 

We can sit and sulk over our lot.  I can't say I haven"t.  I try to follow your example of child-like acceptance and trust, but I know too much and have lived too long to be perfect at that sort of thing.  But it dawned on me, as I watched you and your IV pole glide down hall like best friends, waving to nurses and making friends with other patients.  And as you set up a manicure stand and gave the nurses and patients free manicures. And as you taught nurses hand jives, and challenged them to glove-putting-on races. And when I saw you playing with every bit of energy you have. That while we may have had no choice in this recurrence of cancer, we certainly have the choice of what we do with it. 

I imagined us hulled up in a harshly lit, hospital room for the foreseeable future, you curled up in agony, and me helpless at your side, forgetting what happiness even felt like.  But I was so, so wrong.  It helped that we were some of the first to try out the brand new hospital wing, in which Oncology now sat.  It feels like the Hilton of hospitals, with it's wood floors, recessed lighting, and large bathrooms. We could relax and spread out and enjoy a little home away from home.  And while even a nice place could feel dark and lonely if we let it, I just never factored into my future your attitude. You never waste a moment that could be enjoyed.  And Kaylee, not everyone does that. 

Not everyone knows that we can choose how we react in different situations.  I don't think I even knew that.  It feels like we have been given too much to bear sometimes.  And then in a moment of seeing you and your cute little chemo friends dancing to "Call me Maybe" with your IV poles I can see that there is joy if we choose to see it. Not just joy, as in, oh that's cute--but seeing-the-light-for-the-first-time sort of joy. 

It feels like we had this stale existence, where we thought we knew happiness and fun, but we went about our day the same way all of the time.  I imagine it to be a lot like Adam and Eve in the garden of Eden, thinking, this is a really great place to live.  But I guarantee, they never knew how great it was or what it meant until they were out in the real world with the harsh elements building up around them.  And then when the sun finally peaked through the clouds, and the little plants they raised from seeds they dug into the cold ground with their own hands, finally sprouted from the earth, then and only then, I think they knew what real joy was. 

With such excruciating pain, comes some of the most exquisite happiness.  But we have to choose to see that.  I've chosen both. Sometimes I can't do anything but dwell on the pain, but you Kaylee, always choose the better part.  It's a perfect example to me.  And so, I've decided to make my choice. It may be something I have to choose every morning. But you have made it easy with your clear example of what is better. So, I'm gonna dance when it's dark.  I'm gonna sing in the ambulance.  I'm gonna become a Kung Fu master in my radiation gown. I'm gonna choose happiness.  

More Hard Stuff. . .

I'm really glad I wrote that last letter to you Kaylee.  Because when I'm sitting here now, writing you a new note, I'm finding it hard to write.  Not because I'm at a loss for words, or I don't know what to say.  But when you put the truth out there, sometimes it's hard to see it staring you back in the face.  The truth is, Kaylee, is that the cancer is back.  I hate to write it, I hate to think it, but it simply is.

Just when appointments felt like a fun day trip that didn't tie your stomach in knots or make you vomit in anticipation.  Just when we were starting to know what summer in Arkansas really felt like.  Just when we were planning back to school, and sports and making plans more than a week in advance, we get the news that there is a spot  in your lung. 

We sat there, you, Jackson and me, anxious to be out of this routine visit and on the the pool, and grandma and grandpa's, and dinner at a fun restraunt--When the doctor brought us back to his office.  If there is one thing I have learned in the last year, it is that a change of routine at the doctors, is never a good thing. 

He showed us a computer with a cute little picture of your insides produced by your latest CT scan.  There he showed us your lungs, and veins and heart.  Each stop at an organ left a pounding in my chest at when we would find the problem.  For a small moment I started to think, maybe there was no problem at all.  That maybe he just wanted to show us how good everything was going. But then he stopped, right there on your lung, and clear as day was a small little white spot, a lesion, as he called it. Everyone else just called it a tumor.  But boy how I clung to the word lesion.

He told us, we needed a closer look at that spot.  They would do that through surgery.  Then they would test it, and if it was, as he suspected, Wilms, then that means more chemo, more radiation.  I took it all in, you and Jackson happily by my side, not feeling that weight of the world caving in on us the way I seemed to be.  You looking at the bright side of each comment:
 "I don't mind surgery, that was kinda fun." 
"If I do radiation, I will get to see those nurses again, they are really nice".

 But even you have a hard time finding the upside to chemo.  It sucks.  We can all just admit that. 

I wanted to pace my mind so I wouldn't overthink.  It is something I have become quite good at (and something I've learned from you in these critical moments).  I needed to focus on surgery for now.  But leaving those doors, with so many unanswered questions, was too much. 

We took some time at the hospital park so I could pull myself together.  It was hard to pull together something so broken.  I felt like a shattered glass, that needed to be superglued back together in 10 mins and ready for use again.  It just wasn't going to happen. 

And yet, by some miracle, it did.  I managed.  I found the strength and calm, and I focused on surgery.  I focused on fun, and on you, and jackson and brooklynn and reese. 

We were given a gift of a week before surgery and treatments.  We dubbed it our week of fun, and I enjoyed your energy and your health.  I listened to you tell of your spot that needed to come out, and how easily you talked of losing your hair, when it just finally made it's reapperance. While it was hard for me and your dad not to think of the pains of last year, it was surprisingly hard not to think of the precious moments we had.  I read through these letters I'd written you. And I read the very last post and realized that through lots of hard times came so much good.  I looked back on the fun you and me times, that are only ours.  And I reminded myself that some of that rich goodness comes with all of the hard stuff.

When our week was up, we went to your surgery--you, me, and dad--and got our divinitive answer that the Wilms had returned. We now start tomorrow a long 72 weeks of going back and forth to Little Rock for inpatient chemo and more radiation. It's hard not to be dissapointed, but there are some things that I know.  I know that you are strong and energetic.  I know that you are a fighter that can last more rounds than any boxer.  I know that we've got a lot of faith.  I know we have prayers from around the world.  And I'm reminded that if our future is as bright as our faith, we will be seeing a lot of sunshine ahead.

What I Know Now

If you would have told me at this birthday:

That your next one would be like this:

Or during this summer:

that our next one would be like this:

I dont know that I could have believed that with moments like these:

 

That there would be so many moments like these:

All of the things I never really knew about love, faith, hope, and family on this day last year:

I know so much better this year:

And thanks to you Kaylee, we are all a little stronger.

Hair we are again!

Sweet and precious as the first time it came in, way back when you spoke more with your hands than your mouth, and your chubby feet padded across the floor of our tiny Virgina apartment, your hair has returned.  Not just your hair, but those dark full lashes and your arched eyebrows have all come back to a face that has it's sparkle back. 

 And we just can't get enough of this goodness.

Given The World

Atlas was a greek god, who was said to have held the world on his shoulders.  Did you feel like him sometimes during your treatments?  I know I did.  What a big burden to be placed on such small shoulders.  But how fitting for your Make a Wish visit, you were given a world to escape to, instead of be a burden.  It was the first time, we really felt free of any responsibilities for what seemed like such long time. 

We arrived at the airport and met our wishmakers as they helped us get our bags checked, gave us some spending money, and sent us on our way.  Walking into the balmy Orlando air was like a warm hug as we unloaded from the plane.  As we tucked away our jackets, and enjoyed the palm trees surrounding the Airport we could already tell this place was meant for us.  We got our rental car and headed to Give Kids the World Village, a place we will not soon forget.  Whoever thought of the place, must have been granted sainthood, because it is heavenly.  I am constantly humbled by things people are capable of. 

Kaylee hope as you look at these pictures when you are grown, that you won't just remember a fun vacation, but that you will remember that people we never knew made this happen for us.  That there were volunteers whom we'd never met, who laughed with us, who served us, who cried with us, who celebrated with us, who helped us, and who changed us.   And remember no matter how small you feel in this great big world, and how heavy the burdens you are called to bear, that it is by small and simple things that great, great things are brought to pass (Alma 37:6).

Superman

 

Uncle Kurt says, not just anyone can wear a Superman shirt.  Those things need to be earned.  That's what he told you as he handed you his christmas gift, with this heartfelt message

attached:

This shirt belongs

to the girl who deserves it the most;

The type of girl

of which any parent or sibling can boast.

A girl that showed

in the darkest of times

what it is like

when she really shines.

This shirt is a symbol

of STRENGTH, COURAGE, and HONOR,

things she learned

from her loving Mother and Father.

We are all blessed

to know this girl that can stand

to any trial, test, or obstacle

Just like SUPERMAN.

Uncle Kurt--he's one of a kind.  He swooped in here at Chirstmastime, let you shave his head, shared his baby back ribs, carried you around in the rain, babysat you and your siblings for a few days, and gave you a gift that will forever remind you of your strength. 

Wishes

Surprise!

You know Kaylee, there is a lot of bad stuff in this world.  But, man, I can hardly speak (or write for that matter), without a lump in my throat of so much pure goodness there is from the sweet generosity of others.  The things people think of to do for people in times of need never ceases to amaze me.  The Make a Wish foundation is just one organization that has turned the end of an exhausting journey into a memory filled, dream trip that we alone would have never been able to do. 
Revealing your wish, to go to Disney World, was the perfect way to celebrate the end of your treatments.  We gathered some family at your favorite restraunt and the Wish makers planned an evening of presents and surprises that alone was a dream come true.  Then we had the Trip just weeks to look forward to!  I am just so impressed at the lengths others go to, to help perfect strangers.  I hope we can always pass it forward.

Checking out the Itinerary

Wishmakers :)

"Wishes Really do Come True"--so true

One Happy Girl!