Wednesday, May 1, 2013

Trade ya'...

I'm going to Disney World!!

Yup...but it's just me, no kids!

Sound like a dream? Or nightmare?'s not for fun, I'm heading there for a conference about childhood cancer. I'm very excited to get to meet some of my fellow momcologists and hear from some of the best researchers in the world about what's coming on the horizon. It's going to be awesome!

The last time we were in Disney was for Braden's Make A Wish trip in August of 2009. What a wonderful/awful trip.

Wonderful because the boys enjoyed it so very much. Awful because we thought Braden was dying and that everything we did would be a last.  There are no words to describe how blessed we feel that he is still here! Absolutely amazing!  Thank you Lord for the gift of time!

On our trip in 2009, we stayed at the Give Kids The World Village which is an awesome place in itself. One of the things you get is a special pass that admits you to any Disney park that you want to go to and allows you to go first in line, no waiting in the long lines.

We went through the handicapped lane.

The thing that amazed me were the ugly looks and comments from people waiting in line. They were just MAD that we were getting to pass them and zip to the fun part without the long, hot wait.

I mean MAD!

They would give you an evil stare and quietly say nasty comments about us to those near them.

Braden still had his hair, we all looked healthy.

Little did they know what was beneath that appearance. "No known cure", "Less then 10% chance for 5 year survival", that's what we were facing.

I would look back at them and think "I would trade you in a second!" I would be happy to stand in that line for an hour waiting to go on the Dumbo Ride. I really would, if I could reasonably believe that my son would be alive in 6 months.

I would give anything to be in their hot and miserable shoes.


Even kiddoes in wheelchairs got ugly looks...are you even kidding me???  Wow!! I was shocked.

And while I wished that they knew our story and weren't so hurtful and awful in their need to judge, condemn, and blame; I also hoped that they would never find out exactly what it's like to be in our shoes.

All the fight was gone from me at that point or I'm sure I would have spoken up. I was in a deep depression and a very sad place at that time. All I wanted to do is hold my son,

and change his fate.

And I could only do one of those two.

Since that time, I've had so many cancer families tell me that they have had similar experiences. Their child gets a special wish or honor and people around them tell them how "lucky they are"!

Lucky?? Really???

No one is lucky to have cancer. ESPECIALLY a child!

Maybe a better word is "deserving". These kids who fight cancer deserve a few breaks...they deserve some kudos, some time to enjoy life, and they deserve to be honored and celebrated.

There are few words to explain what these babies have to go through with cancer treatments.  Devastating, painful, horrific...those fit.

Unfair..that fits too. They should be playing and going to school and having friends over and not wondering if tomorrow they will die.

Their siblings and parents should not have to wonder and worry. It's not right.

Every day of their lives, they will have to wonder. They will wonder if tomorrow is the day it comes back and they have to fight again, and maybe this time they won't make it.

Long "special perks"....I'll take it.

I PRAY for normalcy..for being able to let Braden play soccer and not have to worry that his port will get hit and he will die.  When he had a Hickman I prayed that he could simply take a bath or shower because he couldn't do that for fear he would get it wet. Over a year of sponge baths.

I prayed that we would be able to simply sleep in our beds at night with all four of us in our house.

I prayed for no alarms going off in the middle of the night to change feeds, add another chemo, or give medicine doses.

I prayed for a meal with my family, at a table and not just fast food with plastic forks and styrofoam trays while sitting on the parent couch at the hospital.

I prayed to be able to go outside. Just GO OUTSIDE!  We were in the hospital for weeks at a time and while we could see outside from our window, we couldn't GO outside.

I prayed for boredom and routine.  Oh how I prayed for predictability, and control.

So many wonderful people reach out to help and give children with cancer a reason to smile because they get it. They understand that they should not have to go through what they are enduring.

They CARE.

They LOVE.

And they hold out their hands wide open and fold their kindness around our babies. It's truly one of the most beautiful things I have ever witnessed.  And the smiles these kids get from those acts...are priceless!

Everything we do with the foundation focuses on giving kids these perks because they deserve it!

So to the precious and vocal ones who don't get it, I feel sorry for you. I truly do because apparently you haven't learned what those that hold their arms wide open have learned:

Selfless and compassionate acts matter!

Thank you to the countless people who have reached their arms out for not only our family, but for any families of children with cancer. Your gracious acts are greatly appreciated.

And, to those strangers who didn't get offer stands...

I'll trade you any day of the week.

ANY day.