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...

Thursday, October 9, 2014

A Bus Ride

Today was a big day at our house. 
A yellow school bus stopped at the end of our driveway at 3:30. 
It delivered a sweet girl to me and she was beaming. 

I've always driven my kids to school and I've always picked them up from school. 
Actually, my husband drives to and I pick up
They go to school in a rural area. 
Ten minutes down the highway for the primary school. 
Another ten minutes or so for the intermediate school. 
The primary school houses pre-school through 2nd grade. 
While the intermediate teaches grades 3-5.  
I will stand firm with my assertion that primary school is too young to ride the bus. 
Then there was Zoe's cancer. 
And the fear of germs while she was immune suppressed for two years. 
We live so far out that a bus ride to school would be close to an hour event. 
Ten minutes in the car or an hour on the bus?  

There's a shuttle between these two schools, dropping kids from the intermediate off at the primary school which is closest to us. 
So, Zoe has been riding the shuttle since 3rd grade in the morning and after school. 
Her dad drives her and her sister Gigi to the primary school and they arrive by 7:30. 
Z jumps on the 7:30 shuttle to her school and dad takes Gigi into her school. 
Then he high tails it home for a hot cup of coffee. 

But lately, things haven't been so peachy on that shuttle bus. 
Now, I've written past posts about bullies my daughter has dealt with. 
Girls who scream in her face. 
Girls who think it's up to them to decide who can be friends with whom. 
But this bully is different. 
She's bigger. 
And meaner. 
And older. 
She's the bus driver. 

I've learned that some people just don't like children. 
And don't want to hear children. 
They forget that the children they are in charge of are loved by someone. 
That these children have rights. 
But they don't care. 
And their boss doesn't care. 
Because of.... I'm not sure why. 
But I do know one thing, I won't stand for my daughter being screamed at by someone. 
Someone who just does her job for the paycheck. 

So, we pulled Zoe off that bus.  
And told the principal why. 
And the principal called the bus barn to air our complaint.  
The principal informed me that the bus barn already knows about the situation from previous complaints.
And my husband called the bus barn to air his complaint. 
The bus barn didn't seem to care. 
We checked into a different bus and driver. 
The bus that would bring her home. 
A 40 minute ride. 
We were told that the #6 bus was a good bus. 
Not too crowded. 
A kind, non-screaming male driver would deliver our precious goods 5 days a week. 

So, today at 3:30 I waited in our driveway. 
With sister and grandma in tow. 
Not too close to the road. 
I didn't want to embarrass my 4th grader.
We waited. 
And waited. 
When is this bus coming?
Then my excitement level went beyond the treetops when the bus stopped at the end of our drive and the door opened. 
My girl. 
My girl was home. 
Out she bounded. 
The girl who has survived sickness and so much turmoil in her young life. 
She did it. 
She rode the bus all the way home from school. 
Like everyone else. 

Tuesday, September 23, 2014

Harvest Time

The farmers are out in droves these days.
These days being harvest time. 
Harvest time in Central Illinois. 
When the corn has dried up. 
The days are getting shorter already. 
There's a crispness to the air in the morning. 
And fog envelopes the barnyard at dawn. 

Harvesting corn is quite an arduous process. 
I have a few farmer acquaintances. 
Really, husbands of moms I know from my kids' school. 
These guys work hard. 
Soil testing. 
Hoping for rain. 
Then hoping for sun. 
Then hoping for less rain. 
It's a constant "keep your fingers crossed" form of employment really. 
Because you can do everything right and Mother Nature can make it all go horribly wrong. 

Warren Buffett, the billionaire, has a son named Howard. 
And Howard has farms throughout the Midwest. 
One of those is directly across the street from our home. 
They do things a bit differently on his acres.
He does a no-till method of farming. 
And he grows cover crops after harvest. 
Which many don't do around here. 
He utilizes agriculture students from Southern Illinois University to do some of his work.
My dad will drive by the barns across from our home, his childhood home, in March and declare "there's a car over there.  What on earth could they be doing there in March?"
I reply "farmer stuff."
Which I really know very little about. 

I know Monsanto limits what seeds are used. 
And how farmers use their seed. 
And if you try to make a new form of corn, that's frowned upon. 
Only they can do that. 

The corn is inedible. 
It's got a very low moisture content and I've heard it tastes like cardboard. 
Very dry, old, crusty cardboard. 
It's processed into many things. 
In our town, Decatur, it's processed into corn syrup. 
And livestock feed. 
Otherwise known as Archer Daniels Midland Co. 
Otherwise known as God. 

Saturday, September 20, 2014

Household Duties

An assignment was given for my blogging group, Homesteaders and Homeschoolers. 
The topic is "how are household duties divided amongst your family."
Well, since I have a hired maid, cook, gardener, and animal caretaker I don't have any duties at home. 
"Snork, sniff, uh, what?  I'm awake. I'm here."
I was in fact dreaming up there, folks. 
I do it all. 
End of story. 

All kidding aside, I was very fortunate to marry a very helpful and eager man 14 years ago. 
I hate how he loads the dishwasher, but he does do it. 
I really loathe doing that job, so we seem to both split the duties of that thankless chore. 
Yes, thankless. 
When is the last time anyone in your house said to you "thank you for cleaning that fork so that it's clean when I want to eat a salad."
No one has ever said that to you. 

Laundry I don't mind doing. 
I will wash. 
Then dry. 
Well, the machine really does that job. 
But, I assist. 
And I fold. 
My husband and children both will help fold if I'm knee deep in another task. 
But they all fold as if they are using their feet instead of their hands. 
So, I fold. 
But, I've assigned the children the job of putting away their own clothes now. 
I get moans and heavy sighs about this, but I remind them that I've done most of the work in this area and these polka-dot socks and Minecraft shirts are their things. 
And these things are their responsibility. 

The girls will feed the dogs and cats when asked. 
And the chickens. 
Chad gets the majority of the barn chores. 
Feeding and cleaning the stall in the wee hours of the morning. 
Really, 6:30 AM. 
But in the winter....that sucks. 
We all check the barn throughout the day for chicken eggs. 
I've even had the girls use the dog pooper scooper to pick up the piles of dog doo in the yard. 
Everyone LOVES that job. 

Yard work. 
I love to mow. 
Always have. 
It's like my free time. 
My alone time. 
Chad saws things. 
And burns things. 
And he's in charge of our swimming pool. 
I do nothing unless instructed by him. 
Which is usually just checking the skimmer for leaves. 
Otherwise, I sit on the deck and admire his work. 
There is one job I just do not do. 
And really have no idea how to do it. 
Changing the furnace filter. 
We suck up 2,456 pounds of pet hair daily into the furnace filter. 
That is Chad's job. 

Really, we all help out one another in this house. 
Chad and I both cook. 
I bake, though, as he doesn't really like to do that. 
But, I enjoy it. 
He can make some killer creme puffs if the mood strikes, though. 
He takes the girls to school. 
I pick them up. 

We have had a sick child and understand the need to "pull it together!" and have the mentality of "we are in this together!"
As I think most of our married friends do. 
Marriage and children are a balancing act. 
One side of the scale tips too far and loads up one person's agenda to it's maximum...there's going to be trouble. 
So, we all chip in together. 
We don't pay our children to help out. 
We ask them to help out because it's the right thing to do. 
This is OUR family. 
We teach them to stick together always. 
And keep family first. 
But, would it kill someone to play the lottery a little more often so I can eventually hire that maid!
This one just dusts cats...

Friday, September 12, 2014

A Disney Trip Ending

Eight days in the land of Mickey Mouse. 
Eating extravagantly. 
Drinking cold drinks until your brain freezes. 

Soaring on roller coasters that looped and made us scream. 
Riding a tower of terror and laughing about it. 
Seeing princesses and a bear who adores honey. 
Traveling to various countries all in the blink of an eye. 
Marveling that my daughter rode a waterslide that even grown men wouldn't attempt. 

It was hard for me to leave Disney World. 
Where your day is greeted by singing and dancing, streamers and fireworks. 
I could see that every day of my life. 
And I doubt it would get old.
There's a joy when you take your young children to a special place like this. 
Yes, it's expensive. 
Yes, it's touristy. 
Yes, it's hot and you sweat in unmentionable places. 
But, when your five year old wants to ride It's A Small World over and over and you see her beaming like this...

You have hope. 
Is she marveled only by the costumes and songs?
Or is she a future ambassador of global unity?
Well, when she's done taking a selfie, I'll let you know...

Monday, September 8, 2014

A Disney Trip Middle

We have stood in so many lines to see so many different Disney characters I believe my husband's knees gave out around 2:45 today. 
His knees!
They gave out!

The heat in Florida is like oven heat. 
I'm used to something else, I guess. 
Corn reduction/woodland greenery heat?
Anyway, it's probably intensified by all of the concrete I've been surrounded by since last Friday. 
The rain comes every single day. 
My friend Mark from high school, who now resides in Orlando with his hubs Tom, sends me a radar rain report daily in my FB messages. 
Luckily, and we aren't always in that camp, we've missed many of the huge downpours. 
We've been in restaurants. 
Or shows. 
But, we have had to pull out the umbrellas and ponchos and my rubber CROC sandals have been a godsend. 

Sunday, September 7th. 
The 4 year anniversary of Zoe's cancer diagnosis. 
She spent the day at Epcot in Disney World. 
Oblivious to the date. 
To the anniversary. 
She was instead engulfed in fun with Princesses.  
She traveled to Japan, France, and England. 

She went to space and soared over California. 
She celebrated life and the fact that she still had hers. 
As our day ended and we walked to the shuttle to head back to our resort, she literally was signing and dancing in the rain. 

Oh, and I had some orgasmic French Macarons. 
Heaven in a box...

Friday, September 5, 2014

A Disney Trip Beginning

We've been at the Wonderful World of Walt for a day and a half so far. 
It's rained a lot so it's a good thing we have ponchos and umbrellas...

Besides rain we've also dealt with...
A crabby-ass five year old who sneers when you ask to take her picture just about anywhere. 

A grandma who doesn't want to ride anything but wants to watch you ride everything. 
A crabby-ass five year old (same as one above) who begs to ride Expedition Everest three times and cries three times.
A grandma who forgot her umbrella and the sunscreen in her room. 
A crabby-ass (you know who) who doesn't ever want to fly on a plane again.
But I'm not walking home, kid. 

There's also been this...

 And this...

And La Fou's Brew. 
And Mickey pretzels. 
And dancing in Africa. 
And a safari through the savannah. 
And my oldest daughter saying "I'm so glad we're here!"
And that crabby-ass five year old declaring "this is THE BEST RIDE EVER!" while floating along in a boat through It's A Small World. 
What a magical day and a half it's been.