Monday

Here's the deal about childhood cancer and autism

The first words out of my mouth after the doctor told me Joey had a tumor were, "How does a five year old get a brain tumor?"

But sadly, it happens. It happens to children younger than five. It happens to babies. Some babies are born with cancer and other terrible diseases. 

But why? And how? Most people never even see it coming. One day you're at prenatal water aerobics class, and the next day you're on your couch bawling your eyes out to your mom over the phone because you've just been told something is wrong with your baby.

And all the doctor can say is, "Sometimes it happens."

Sometimes it happens. And most of the time, we don't know why. Or how. But dammit, we do know that things happen for a reason, so we must find out why. It's human nature to believe there's always a reason. Whether that reason involves science or divine intervention, we all seem to be in one camp or the other.

So we pray and read the Bible. Or research and read medical reports. We talk to people who are like-minded in order to add fuel to our theories. Then we make our conclusions. And we stand by them NO MATTER WHAT because, after all, there has to be a reason. 

We put ourselves into two opposing camps, opposite sides. The Sharks and the Jets. East vs. West. Vaxxers vs. Anti-Vaxxers. SAHM moms vs. Working Moms. Men vs. Women. Blacks vs. Whites.

Someone has to be right. It's not right if no one is right. 

There's a third camp, the rebel camp. They refuse to believe either theory. They will not take sides. Their explanations are simple:

"This is just the way things are." 
"He was born with this."
"I love her for who she is."
"We are all doing our best." 
"There is no right answer."

The message is beautiful, embraced, shared, shouted from the rooftops - YES, YES, acceptance is King! It's the only answer!

And then we go right back to blaming each other.

For the measles. And peanut allergy reactions. And racism. And dog poop and cat fur and stealing someone else's place in the parking lot at pick-up time.

I'm sure it's always been this way - parents judging parents, people hating and resenting other people for their beliefs and actions.

But it just gets to be so much, don't you think?

We live in the information age. Because we know so much, we think we should have ALL the answers. But we are actually afraid of answering the biggest most important question: What if there is no answer? 

What if no one is right, and we're all just speculating?

Sure, a lot of our lives have been tested and quantified and hypothesized and we can definitively say what the right answer is. Last night, Knox was studying times tables and there was doubt in his voice every time he gave an answer.

"Are you asking me or are you telling me?" I would say.

Slim chimed in more often than I would have liked him to and blurted out the answers. "The theory is that Knox needs to figure these out himself, " I said, trying to sound smart and authoritative.

"Math facts aren't a theory, Mom," Slim stated. "They're facts." He punctuated the word "facts" with a "DUH" just like tweens are so good at doing.

He had a point. Some things we just know because they are proven and no one would ever bother to argue over whether seven times eight is really fifty-six or not.

Because it doesn't matter. It's not sexy and controversial and proving it wrong isn't going to win you any accolades or fame or make your blog post go viral.

image by Vlado

Here's what I think I know about childhood cancer and autism:

We've experienced both in our house, and they both totally suck fat disgusting maggots. Both, while seemingly empathy driving, are lonely as hell to go through because no one understands them like you do. Unless you seek out a group; but even then, no one has your exact same experience. And after all, it's exhausting enough just focusing on your own experience.

They are complex and often misunderstood. I still don't really understand either of them. While I can't speak with certainty about what caused Joey's cancer, I do know what caused Slim's cleft lip and palate and his ADHD and his autism. A gene deletion. Because of his birth defect, he has been poked and prodded and tested and studied and YAY, we get to know why our kid is different. We get an answer. 

But you know what? That answer only leads to more questions. Why does he have a gene deletion? How did he get it? Did Joey have one, too, that was known to cause cancer? Was this because they were fertility babies? Was it because I fed him too much non-organic milk and carbs or red dye #40? Or was it really caused by vaccines and I was just too stupid to do research before giving them to my children? 

Believe me, I don't need any other person to make me feel guilty about anything. I can do that just fine on my own.

We survived childhood cancer and the death of someone we loved. It was hard, so incredibly difficult; and it will be for the rest of our lives. Most days it feels like no one understands, but we are making it through to the other side.

We are living with autism in our house; and it is hard, so incredibly difficult and lonely, but we are managing it because we love our son. I don't think any GOOD parent, any truly loving person can say they love their child any less because of a disease or disability. And no matter what their stance - pro or anti vaccine or stay home/work away/free range/helicoptering/breast or bottle fed would ever seriously wish a terrible disease or affliction on a CHILD just because we don't happen to agree with how their parents are raising them.

So here's the deal about cancer and autism and the measles and birth defects and lice and the freaking stomach flu that just won't go away: sometimes we know how kids get them and sometimes we don't. We can take our knowledge and do the best we can to make decisions that jive with our faith and beliefs and morals and conscious, and we can love our children as best we know how. We can share our facts and information with others because that is our right in this society.

But it is also our responsibility to speak and act in the best interest of others as well. None of us is an island entire of ourselves. We live here with everyone. We must be kind and considerate and think of how our actions and words are affecting other human beings before we put them out there. We are seeing less and less of that in our world, and that makes me sad for my children's future.



The real deal about childhood cancer and autism is that they have made me less willing to fight with people over whether they feed their kid organic food or eat at McDonald's, whether they vaccinate or not, or co-sleep or take their kid's puffy coat off every time they put him in the car. Childhood cancer and autism have taught me that no matter what you do, what decision you make for your child, there is always a greater force at work that seems to say, "But anything can happen at anytime when you least expect that it will."

Childhood cancer and autism have taught me to simply forge ahead and do the best that I possibly can for my children because at the end of the day, that's the only deal that matters.








Related Posts Plugin for WordPress, Blogger...