It's Not About Facts

After someone dies people have a list of things they like to say.  They have beautiful intentions. They mean to make you hurt less.  They mean to divest themselves of the guilty way they feel as they witness your pain. None of the phrases on their list can accomplish at least half of their purpose.

 

“He’s not suffering anymore.”

 

“God has a plan.”

 

“God needed him back.”

 

“God picked a perfect angel.”

 

God. These are all bullshit especially when applied to a ten year old boy, but you smile and thank the messenger because they mean so well. They mean to find the silver lining, wrap it up, and give it to you, to be helpful.  They want to fix the thing that will forever be broken, and you can’t help but love them for that.

 

Why was this happening to Beydn, to people who loved him? I could never see.  I don’t think I ever will. Why was he being stolen away when he had barely been with us?  The first month of diagnosis I thought God would take care of us in the way that I needed. I had no doubts.  Beydn would be fine. As one half of his family this would put us where we wanted to be anyway, with him.  This was given to him, to make him stronger, to help him see that no matter what obstacles he came up against he could do absolutely anything.  He would be the kid who lived, and I had intentions of always reminding him of that.

 

As the weeks went on I still believed Beydn would be the one that made it. Through surgery, through mysterious bleeding, through fungal diagnosis, he would be it. When they broke it down, and we did the silent math that told us his odds weren’t good I still believed he would be the miracle.  I asked Josh to take pictures of everything he was going through at the hospital, which he as doing anyway. I wanted Beydn to wake up and be shown this thing that he had slain. I wanted him to read his own case study, see his own mortality lain out and conquered. When your parents all tell you that you’re special it’s one thing, but when medical science shows you how can you negate that?

And then Beydn died.  And I didn’t want to know why. The scenarios that played in my head were only how could we have let this happen?  What different understanding could have prevented the fact that I will never see his face again? Regardless of my part in any of his life or death, I felt responsible.  I felt like there was a part where I should’ve said “Hey, everybody just wait a minute we can’t do this thing the way you are now.  It won’t end well.” It’s not logical, it’s not possible.  But it’s how I felt. It’s how I still feel. I didn’t keep him alive. I didn’t do a part of my job, the part he trusted us to do.

I am not a cancer parent. I’m not really anything.  But I loved a little boy who died from cancer, and I’ll never be the same. He wasn’t even a boy anymore more like a half grown almost teen man. But he was my first baby. I cooed over him in the hospital. I rocked him when he was sleepy. I fed him, and dressed him, bathed him, and worried over him, worried for him.  Oh, I worried. I became frustrated with his inability to listen.  I became enraged at how I perceived others treated him.  I cried every time I had to send him away.

Every time we took a picture, or did something special without Beydn with us I felt guilt.  Every time I looked at my other babies while he was with his mom I saw the hole.  And now that hole will never ever go away. Not eventually. Not for holidays.  Not for summers.  That hole is gapping and wide and has teeth that tear me apart in my sleep. Constant parents hurt because their every day is gone.  I hurt because it never was. And yet we had that once when he was little and the Army had us all in one place. Except now he’s not anything, and we’re still here.

 

Your own babies are different people told me.  It’s a different thing to have grown a baby and felt it inside of you.  You don’t want to believe it, but you’ll see. And it was.  Different. Very.  But he was still mine.  I could never find the argument to prove that until I knew he was dying, until it was broken down to just him. All those things that frustrated me about sharing him had nothing to do with him and everything to do with situation and circumstance. All those innumerable ridiculous, petty things that for most of 8 years had made me want to pull my hair out, they weren’t him and they didn’t matter. I closed my eyes and I tried to imagine that I could save him. That if the doctor came in and said the fungus was just in his intestine or his brain or his heart and a transplant would cure him then I could give him mine.  I tried to feel the breath of hope that he would have if this was what would happen. Maybe it’s just because I couldn’t, and somewhere in my subconscious I knew it wasn’t going to matter, but the thought of dying for him didn’t give me the desperate flight or fight feeling I get from just thinking of dying in general. All I could think was that my 28 years were still more than just his 10. I opened my eyes and there was no doctor.  There was no hope, just the desperation seeping out of my skin. I think the nurses felt it. I could see it in their eyes on that last night.  Watch this one.  She’s the question mark. But I stayed calm, because what right did I have to be anything else? Oh, that I had been anything else.

The thing that has gotten me through many days recently is this-

The reaction you have to trauma is not about actual facts.  It’s about what you felt.

And I felt responsible. The way I felt when he didn’t have the right shoes. Or a coat. Or jeans. The way I felt when he told me had wanted an electric scooter for Christmas, but he hadn’t told me because someone told him he didn’t need it.  Defeated. Just tell me and I’ll figure it out I’d told him. We’ll always figure it out. But we hadn’t.

And he died.

There are indescribable and simultaneous peace and destruction in my heart always battling to wash the other away. And I am so tired.

September

September 1st

It has been almost 22 months since Beydn was diagnosed with a variation of the most easily treatable form of childhood cancer. It’s been a little more than 18 months since he died. In that time we have become outraged over a never ending succession of headlines, some that I’m sure you’ll have to dig into your consciousness to recall, others that will continue being regurgitated front page begging to be resolved. Routinely, we’ve been indignant because ‪#‎BlackLivesMatter‬. We’ve been angered because some thought it necessary to ‪#‎StomptheFlag‬ to prove it. We’ve cried because a lion who was ‪#‎notatrophy‬ was killed for sport and tried to compare his life to human life in an unending debate over the morality of abortion and the cry to ‪#‎DefundPlannedParenthood‬

To be clear, let’s be real. No one should die a violent death because they are acting in a way that helps them survive in a system that has perpetuated itself for centuries, but laws are laws (albeit some ludicrously) to give us order and safety. No one should desecrate the flag that gifts them their freedom of speech, but they have that freedom; so, no one should stop them. And no living thing should be destroyed before it can fulfill its purpose, but no one should be forced to parent beyond their emotional, mental, or financial means. Is that all grey enough for you?

People keep fighting as if there is a black and a white when, in fact, everything is grey. Everything. I’ve grown babies in my body and could never have intentionally ended what I knew was life already there. But I also watched Beydn die, and if in that moment someone had offered a cure to save him, some research done with fetal tissue, then I would have begged them to give it. How do you get to say you mind your own business about endangered species, but want to control the autonomy of someone else’s body? How do you break down the first signs of human life in utero to nothing but basic cells and still become enraged over the slaughter of a mere animal? How do you dismiss the murder of a man who is living a life circumstances dictate he live, but hate the woman who refuses to add her progeny to the cycle of circumstance? How do any of us think we’re right?

We’re not.

No one should be forced into a life or a death by the choices of another, and yet every single day an average of 7 kids are. We sit in judgement of actions and attitudes that are deeply marred in history and personal experience and yet do nothing about the things we can expediently change for the better. We choose not to fund research for childhood cancer. We choose to pretend it will never be our kid who is sick. We choose to look the other way while big pharmaceutical companies profit from adult blood pressure medicines and the smaller non money makers of children’s cancer cures are ignored.
We’re killing our kids.

Why should I care about a lion? That was a big line of indignation from so many after Cecil made the news. Let me tell you why. Because a life is a life no matter how small, black lives matter, police lives matter, and so do furry ones, but to say all lives matter when you are on top is dismissive at best. There is no exact comparison, maybe. But there should be equal compassion. The same attitude that bred one self-righteous-I’m-highest-on-the-food-chain attitude also gave life to the others. The society that makes white, upper class men the lucky recipients of the best medical treatments is also the society that deemed it tolerable for them to use excess income to trek to foreign lands in order to murder majestic beasts. It’s the same society that drives a hand full of individuals to decide the best way to express their anger over racial inequities is to destroy and burn cities, the same one that drives an individual to shoot unarmed worshippers in the name of skin color. This is the same society that makes all our other dirty actions ok- keeps brown skin marginalized, gives authority unchecked power, keeps women from learning to say yes or no making abortions a necessary decision, making poor children into poverty stricken adults. This isn’t four dozen problems. It’s just one. Where we fail is at seeing there is no one side to any debate; then there’s cancer. Cancer is, as always, the great equalizer.

Because it is also our same society that will let those rich white men’s children die the exact same death as poor brown ones. We will continue to fail children of every race, situation, and upbringing over and over until clinical trials are funded, until kids are allowed to choose treatments that are now deemed only for adults, until childhood cancer is looked at as profitable for the world outside “just” sick kids. Until the money is there kids of every ethos will keep dying. And one of those kids might have been the truth seeker, the peace speaker. One of those kids might have been the one who could sew all these ideas together. But we watched as their cells rebelled, their bodies betrayed them, and we prayed, but just weren’t angry enough to put ourselves in motion. The answer to this prayer is the ability to take action.

So many things are spun up in the impossible web of generations of wrong doing and wrong thinking. There are so many wrongs in our world and the side effects of them all are great grey injustices. This one thing, we can do something about. My point is not that all these other vitally important socially and culturally blurred issues don’t need addressing. They do. Desperately. Our world is as broken as it is inspirational. My point is that this issue, this whole kids are dying because we can’t get the right drugs to them thing- IT’S FIXABLE. AND IT APPLIES TO EVERY SINGLE WALK OF LIFE IN AMERICA AND THE REST OF THE WORLD.

We want our kids to live in a world where they don’t see skin color as a difference maker but at most as a learning opportunity. We want them to live on an earth where there are lions roaming their native habitats not just existing behind bars. We want them to live as part of a community where they don’t see economic disparity as a brick wall but as a chance to share what they have. We want our kids to live. All of them. But for our family, and so many others, that ship has violently sank.

Should we just keep waiting?

‪#‎gogold‬ ‪#‎CCA‬ ‪#‎morethan4‬ ‪#‎stepup‬ ‪#‎forbeydn‬