#TakingItBack2015

I've been quiet for a bit and haven't blogged.

To be honest, I've been trying to figure my life out.

For the past (almost) 8 years, my life has been nothing but a mission to fight cancer and save Braden.

We know we are never out of the woods, we know that both of our teams in KC and Philly have never seen a child with secondary MDS post relapsed neuroblastoma survive for 5 years, but as of right now... for today...

Braden is in remission from both cancers....

all thanks to the bone marrow donation his brother, Zach, gave him to try to save his life.

My life has been completely consumed by fighting cancer since December 28, 2007.

I dream about it, I spend my days and nights on the computer researching it, and my sole mission is to obliterate it.

No one should ever hear the words, "No Known Cure".

Period.

And for the first time in nearly 8 years, we are not in active treatment.

Seriously.

He's been actively fighting cancer for that long.

And now I find myself at a bit of a loss; trying to figure out what our new normal is and how I can trust it might stay this way for a bit.

Since Braden's initial diagnosis, I have felt like Wile E. Coyote, waiting for the anvil to drop yet again and our world to once more be destroyed. It happened so many times that eventually you actually do begin to act like that crazy coyote and you just hold up a sign that says, "Not Again" while you fall into the canyon of the next crapfest.

Braden's Hope For Childhood Cancer, our non profit, has been my sanity. Through it my friends and I have been able to help hundreds of children and bring hope to them through research and awareness.

It has kept me positive and given me a purpose and made me feel like even if we didn't beat Braden's cancer, we might be able to beat it for another family.

And there is a great deal of peace in that.

But now that things have "normalized" a bit at home, I find myself wanting a life for me again.  Before all of this crapfest, I had a life. I had a career that I loved very much. I actually didn't realize how much of my own self identity and self worth was wrapped up into my career, but it was.

And once that was gone, I had a hole and an emptiness. I didn't leave it voluntarily, it was ripped from me by cANCER.

I miss it. And I loathe cANCER for taking it from me.

Yet at the same time, I am very fulfilled in my role as mom and President of Braden's Hope. However, I yearn for my own self identity. I know, that sounds contradictory and a little crazy; I'm not explaining it very well...

I want back what cANCER stole from me. I want my life back.

Now that Braden is one year post transplant, and the vast majority of relapses occur in the first 12 months, I have my sea legs back again. I'm scared to stand on them because they always seem to get cut off when I try, but I'm going to take my mom's advice from when I was a little girl and was showing quarter horses.

"If you get bucked off, you get right back up and on that saddle and show your horse that you are in control and you are not afraid, even if you are. If he knows you are scared, he will always be in control and he will just keep bucking you off..."

Well I am afraid. I'm terrified to try to take my life back and rebuild it from scratch because the anvil always seems to fall again and it's absolutely devastating when you just climb out of the sludge only to be kicked back into it.

But I am going to get back up on the saddle again.

On July 6, I celebrated my 5 year cancerversary and I am now officially a "cANCER Survivor"!

So now, I'm taking my life back and cANCER doesn't get to be in control any longer. It has taken quite enough from me and I am over it.

Momma is back, with new hope and I am now including the word, "future" in my vocabulary. That's a pretty big deal and something I never thought I would do again in my lifetime.

So stay tuned for all of continued #TakeThatcANCER moments and new  #TakingItBack2015 moments.

Get ready cANCER....you lost and I'm about to rub salt in that wound every day for the rest of my life! ;)

We are taking it back and cANCER is now powerless.

TAKE THAT cANCER!!

Brave...

A few years ago, I found a short story by John Alessi that makes me cry every time I read it.

My heart is constantly saddened watching Braden have to go through all that he endures. 

Autism, 3 rounds of cancer, cataracts, asthma, so many challenges...

and any ONE of those things would be enough for anyone.

No parent wants their child to suffer...

even for one moment, 

let alone his entire life...

and through off of his suffering, Braden has been the most positive, loving, happy, and sweet person I have ever met.

(yup...biased mom but it really is how I feel) :)

As I was searching to make sense of why he had to have so much crapfest in his life, I read this story.

And it gave me a little peace.

Perhaps those that suffer the most,

those that have to go through trials that are too big...

endure them for a reason.

Maybe Alessi is right...maybe brave little souls are gifts from God...

and maybe they do unlock the love in people's hearts...

and through their suffering bring humanity to this world.

That is what Braden and his attitude through his crapfest has done for me.

I hope you enjoy this story 

and that it brings you a little peace as it has me.

"Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Thumper...

When I was probably about 5 years old, we lived in town... (the orange brick house at 417 S Smokyhill in Oakley, Kansas!

and on Easter morning, we opened the front door to go to church and...

on the front porch, right outside the door, in a box with a lid, was a beautiful white rabbit with big red eyes.

And a note...

the note said it was a gift for ME!

And it was signed, "The Easter Bunny!"

I was SOOOO excited!!

I remember screaming and running around the yard in my hand me down Easter dress that I loved!!

My parents were clearly surprised....

and not as excited.

The conversation the whole way to church was "who did it".

Ummm....duhhh...the Easter Bunny signed the note people....

this is NO mystery!!

Seriously!!

We got through church where the talk the whole time from my parents and their friends was...

who dunnit?

The talk from me was...

"I GOT A BUNNY RABBIT AND I CAN'T WAIT TO GO HOME AND PLAY WITH HIM!!"

And my friends and I decided to name him, Thumper!

My parents were not "pet"people.  We didn't have a dog or cat or anything...I had my horses...

but they didn't live in the house!! LOL

(My mom was a neat freak just like me!!)

We got home and there was a discussion about how we couldn't keep the rabbit.

And...my brother actually rallied to my defense.

Tears worked too...and lots of PLEASEs...and batting of the eyelashes and promises to take care of the bunny and they wouldn't have to do a thing...and ....and....and.... :)

IT worked.

They located a hutch that we could borrow from the post office manager so we picked it up and put Thumper's cage outside in the back yard near the alley.

At least we got to keep him.

I used to hold Thumper for hours...and had a ton of scratches from his nails but man we loved to snuggle...

perhaps it was ME who loved to snuggle...maybe that's why I had those scratches??  LOL!

I remember going to the grocery store with my mom a few times a week to get the lettuce they cut off the heads of lettuce before they displayed them to feed him.  It was free and my best friend's parents owned the grocery store.

We fed him carrots and cleaned the rabbit droppings...oh so many rabbit droppings!! LOL

But one night, several weeks later, Thumper's cage was open and he was missing.

My brother and his friend, Kenny Ray, went out with flashlights to look for him.

They thought I was asleep when they came back in the house and told mom that there was fur and blood everywhere behind Kenny Ray's house...they guessed it was a dog who got the rabbit.

I cried so hard!!! I still can vividly remember that feeling and standing there in the hallway in my nightgown sobbing!!

So quickly the story changed to the fur wasn't white, it was brown so it had been another rabbit and that Thumper escaped and ran away and was living in the field safely.

Whew...that was a close one!!!  ;)  Thank goodness Thumper was safe!

I still cried for days because he was gone even though I knew he was happy living in the field with his new rabbit family where he didn't have to stay in a hutch and he could run free.

No one ever fessed up to bringing Thumper...again..duh...it was the Easter Bunny....eye roll!!

The theory was that it had been Larry Farmer.

If you ever drive down I-70 heading to Oakley, you will see signs for a place called "Prairie Dog Town" with the world's largest prairie dog..over 2,000 pounds!

Tourists stop all the time to see that...and yes, it's cement!!

But there really is a five legged cow (seriously) and other critters Larry caught (including a rattle snake pit).  I'm not kidding...Larry caught almost everything he had on display!!

And they sell hundreds of "Kansas pies" which is a pile of cow manure in a pie box.

Seriously!  People buy the craziest stuff!!!

I'm not sure if Larry had any influence with the Easter Bunny or not, but if he did...thanks Larry!!

And...don't even think about bringing my kids a bunny on Easter...

I now side with my parents!! LOL!!

The Easter Bunny here brought a stuffed bunny...so much easier!!

Happy Easter friends!!!