Saturday, October 25, 2014

A Deflating Heart

I never knew how hard it would be. 
I never knew that there were others in my camp who wanted my tent to go up in flames. 
They aren't in my face, though. 
They have stayed hidden away. 
And that's why this isn't working. 

When Zoe was diagnosed with cancer, I thought that nothing could ever be harder. 
But in reality, it was easy. 
Because we didn't have any other options put before us. 
We couldn't say "nah, we don't want to do this."
We had to send her into surgery.
We had to stand in another room while her brain was radiated. 
She had to endure the pain and fear and the unknowingness of it all. 
Because it would give her life. 
Without the treatments, death would have been the final outcome. 

With her favorable results, I had a thought. 
Why not get a license plate in Illinois to help the doctors?
The doctors who give so much of themselves for children they don't know. 
And initially it was easy. 
But, truths weren't always exposed during the process with lawmakers. 
Imagine that. 
We didn't know we would have to get 1,500 pre-orders within 2 years. 
We didn't know that the plate may just die before it ever got made. 
I guess it doesn't matter that it was made into a law. 
Law, schmaw. 

But, we soldiered on. 
Had a press conference. 
Sent information to pediatric oncology units in the state. 
Set up a Facebook page. 
And after we did all of that, I saw. 
I saw where people really stood.
And for most people, it was way out in another field with their backs turned towards us. 
And this silence came from the most unexpected of places. 
A place where I thought we would see the most solidarity. 
Other cancer families have been our downfall. 

Please know this, there are some great parents who have supported our cause. 
Who are just as stumped as we are that it's not getting more results. 
A few families who have had a child with cancer who want to give back have supported this endeavor. 
But our numbers seem so insanely small. 
There are far more people who have intentionally not retuned my emails. 
Who have flat out refused to help spread the word. 
People who have much influence, but who refuse to lend a hand. 
And I have no sane reason why they would do this. 
Except this...
It wasn't their idea. 
The money isn't going to their hospital. 
Their organization. 
They tried to do something similar and it didn't succeed. 
I know that all four of the above reasons are truths. 
When we set up a table at the cancer camp our kids go to, we thought that we would get so much action that we would run out of forms. 
That our throats would be as dry as a desert from talking so much. 
But we came home with our arms weary from carrying so many forms back and forth to the car. 
And I was never parched. 
Because the people that we thought would "get it", didn't. 
We were avoided by parents. 
As if we were giving out cancer. 
Instead of hope. 

It was on that day that my heart started to fizzle. 
Like a pin had poked it and I had a small leak. 
And it's still leaking. 
And it's just about deflated. 
Because I have had too many people emailing me telling me what I'm doing wrong instead of asking how they can help. 
It's crazy hard to be an advocate for this cause. 
Childhood cancer isn't pretty. 
It isn't fun. 
It's often fills you up with sadness and a despair that has great depths. 
And I'm getting tired. 

I often wonder if people would be more receptive if our spokesgirl was still sick. 
If she were still bald. 
If she still looked like this...

But she doesn't look like that anymore. 
I don't even know who that girl is. 
I lost my daughter for a few years. 
She had to go into hiding as she fought for her life. 
And I remember when I finally realized that she had returned. 
"Look, it's Zoe. I can see her coming back. I can see her face again!"
Chad saw it, too. 
The chemo and steroids had finally started their long overdue departure. 
Our girl was coming home. 

If we are going to lose the battle of the license plate, I must come to terms with that. 
I must realize that I did what I could. 
I must tell myself that I'm not a failure and that there are other ways to help. 
And I must remind myself that I've already been presented with the biggest and greatest achievement of my life...


  1. Keep up the fight. There a many of us that are still rooting for you. I myself have shared the page on Facebook. I have even contemplated getting the Childhood Cancer License Plate. When I was looking into information on the state's site, I discovered that there was a Autism Awareness License Plate. Since this one will affect our family the rest of our lives, I am leaning towards it.

    Both are wonderful causes. Unfortunately autism is one of those diagnoses that people do not understand. There is so much misinformation out there. I have researched and been vocal about autism. I have gotten shunned by people or told that I don't discipline my child enough. It reminds me of when someone has poison ivy, and people steer away because they mistakenly think that they can get poison ivy from someone else. I watch other children roll their eyes at my child and excluded him. It is painful to watch and no medicine can ever fix that. I am thankful for my little superhero even if everyday is a challenge. One day I will learn how to speak and interrupt the autism manual for dummies, until then it is trial and error.

    I cannot even imagine the unseen battle that your family went through. But I do know that: You ARE amazing and tell your stories with no fear. You ARE a mamma bear and you ARE standing up for your cubs. You ARE an inspiration! I hope that I can be as brave as you when it comes to standing up for my children.

    I am proud to support Team Zoe! I am so happy that Zoe will get to have a normal life. I am hoping with all my might that the Childhood Cancer License Plate become a reality! Hugs to you my friend!

  2. I am sorry for your frustration, perhaps even despair. I am going to make some statements, meant only as food for thought NOT criticism.
    My experience as an oncology nurse taught me that many people, when the illness is resolved are done. They never want to talk about it, meet any staff involved - acknowledge that this event happened in their life.
    OR They jump in frenetically to a 'new' life, one that sublimates the journey they just completed. They change their causes.
    And the causes... there are so many - Bullying, autism, orphan diseases birth defects, cat sanctuary, Boston Terrier rescue, German Shepherd rescue, St. Jude's Hospital, St. Baldricks Organization.

    This is not a personal failure on your part. Disappointing? Yes. But you did all you could and the loss is not yours.

    1. I completely hear you. My husband and I have spoken of both of these two groups (and saw a few of the first ones while their child was still in treatment!). We are coming to terms with this as a defeat in our play book, but overall our winning record outweighs this one loss. Thanks so much for your wise words.

  3. Oh, damn! I just read this tonight...I so wish I had read it BEFORE our visit today.....I am curious what people felt that you could have done differently to make the success rate increase.....You pushed this, with help, in many different ways......