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

For Beydn.

The Aftermath.

Day 122

Five months.

 

Five months without you.

 

Being a stepmom is living with an absence in your life.  It's loving a child as your own when you don't yet know what that means..  It's wanting what's best for another human being when you aren't the one holding the reigns. And because you're not in control it means being angry for a lot of the time, because you feel all these irreconcilable emotions and anger is ultimately the way the whole mess of them will seep out.  It's being mother in spirit, in deed, in heart, never in title.  An absence.

And I am the stepmother to a dead kid.  The absence is inside my soul, and it's permanent.  It's pervasive. 

Does that mean I'm no longer a stepparent?  I don't know that you ever even thought of me that way. I was background noise. Sometimes scary. Made things happen. You never knew a life without me.  I fall back on that some days. 

Day 130- something?

It’s taken me this many days to find something to sort of write.  Almost five months.  I’ve started a few times.  I’ve written a few lines.  I’ve talked to myself.  I’ve talked to you; I hope you heard me.  I’ve felt too many things to narrow them into words.  Hurt and anger and complete misery and exhaustion.  Even a little jealousy. Especially jealousy. Jealous of anyone who got you every day.  Jealous of people who don’t feel this way. 

Jealous of you.  Because if there really is a heaven you’re having a great time.  Please, let there be a heaven.  I believe more in it right now than in God.  I believe more in the impossibility that you just disappeared into the ether than I do in the power of a prayer that didn’t save you. 

Because in those last moments, when everything I had prayed for was clearly not happening, that is what I begged- Please.  Please.  Let there be a heaven. 

I never was good at giving you back

Never.

And still, you died.  It was a sunny Saturday lunchtime, and we held onto you- hands, arms, feet, whatever our fingers could find.  And we let you die.  As much as we’ve ever let you do anything.  You will never have to know what that’s like.  I’m glad for that. The tiniest glimmer of a blessing in this illogical hell.  We stayed with you, wanting it to be over, wanting it to never end.  You died, and we lived through it.

You were born on a Friday, Beydn.  The weekend of a prom that I didn’t go to.  That’s how young we all were.  The weekend of Mother’s Day, your mommy’s perfect present.  Come Saturday the hospital was packed with half the world wanting to see you, to touch you.  Just like it was the Saturday you left it.  I can think of half a dozen people who were in the room when I was there that nearly summer evening.  Not one of them could get close enough.  And it was like that when you died.  If we could have crawled under your skin we would’ve.  We would have breathed for you, given you our lungs if we could.  It doesn’t make sense that nothing in this world of technology made that possible.  The ventilator isn’t actually doing anything.  How did I think that?  It doesn’t make any sense.  It doesn’t make any sense that we were there at all, there in that hospital room with you only ten years from the beginning.

I did not carry you in my body.  I can not speak for you mama because I didn’t grow you.  I will not speak for your daddy because I know his ache is worse than any words I have.  It’s not my place to speak for your stepdad; I didn’t get to see you with him every day.  But I will speak for myself, and there were a thousand things I thought I would get to talk to you about.  There were a thousand things I wanted to explain to the man you were becoming, boy with hands and feet as big as mine.  I thought you would outgrow us all- in a lot of ways.  Now I can only put down in black and white the part of me that belonged just to you, the part that become a parent without knowing one May day.  I will be 70 writing letters to a 10 year old boy.  I can do it until I die.  I did not carry you in my body, but I carried you.  In my arms.  In my heart.  I don’t see any reason to stop now.

So, when I say that I half expect to see you here again, or that I partly anticipated to take you home with us, whole and happy, even in the moment that you died, I don’t say these things because I’m crazy.  It’s just that they seem as possible as any of it.  Or more.  Just as possible as you having leukemia, more probable than your daddy’s shaky voice on the phone, way more feasible than a fungal infection I never even knew existed.  And when I say a part of me looks for you to come in the door any minute it’s not that I don’t remember the truth.  There's just a hope that won’t be still, a wish I’ll always have.  We were always waiting to see you; there's no way to erase it.  Not any more than there's a way to erase you.

There are a thousand images of you that I will never obliterate from my head.  I wish none of them were from that day. The day you died was beautiful.  I thought it would be rainy or stormy, that the outside would match my insides.  But the sun kept shining, the world kept moving along infinitesimally on its axis, and not long after noon we were left standing in the room where you had been. 

I remember saying to a nurse that I had to leave because that wasn’t you, the empty body in the bed, the one that had betrayed you.  She said ok.  Probably because what else could she say, and also, because she didn’t much care what I did.  I had not been a permanent fixture of your hospital stay.  She didn’t know our story.  Couldn’t guess it the way she could see yours and Daddy’s, or assume it like your mom’s. She just said ok.

And what was okay about anything that day? Or the four months before? Nothing.  Not a single thing.  I have been refusing to revisit it in words, but that’s a little like lying. Dancing around the words won’t make you be alive.  Not remembering in the telling won’t get rid of the movie in my head.

I live inside those minutes constantly, those seconds, the ones you used to leave us.  I remember asking why wouldn’t Jesus just take you, going from shaking to laughing and knowing there was nothing to laugh at.  Your eyes wouldn’t close and your lungs wouldn’t breathe and I had to believe that meant you were ready.  The Russian doctor, the one who had told Daddy a few weeks before that you were so strong because weaker boys would already have been in heaven, she had come by and said she was so so sorry.  And she had been crying when I myself couldn’t seem to shed a fully formed tear.  The air was dry and stiff.  Maybe that’s what shock tastes like.  Even though I’d had days to prepare, even though Daddy had warned me he didn’t think I could watch I realize now that I was in shock.  I have never wanted to come and go from the same spot so much in my entire life. And now I simultaneously want to ingrain and wipe away. 

I see you dead sometimes at night when I close my eyes to sleep.  It’s living that waters it down and keeps me from cracking. Because I also see you when your brother says a word, his pronunciation or cadence like yours at that age.  I see you when I comb your sister’s blonde hair, the shade that matched yours before the chemo stole it away. I see you when the baby gestures and I wonder how mannerisms can be inherited; she surely didn’t get to learn it from you. The only way she’ll ever know her oldest brother is from being called by your name to remind us you’re still alive, to remind us that we had 10 good years. It’s just that the good memories can’t outweigh the bad.  The bad is what took you away.

I’m sure we all remember it differently even though we saw the same thing. Daddy swears the tears on your cheek were yours.  I have to believe they weren’t.  If you were crying did you know you were leaving?  If you were crying why couldn’t we stop it?   Those tears fell from Daddy’s eyes while he was kissing your face.  Daddy says he can’t unthink the thought that they weren’t his, but if I do I’m drowning all over again.  That whole day felt like drowning.  The before and the after.  The during was a nightmare.  And I never thought we’d get home.  I wanted to burn the whole city to the ground. We couldn’t get out of Atlanta fast enough.  But the drowning made everything move slow.

I still just can not believe we have to go on living in this feeling for the rest of our lives.

Horrible heavy and a world without you.  All the interminable days of our lives. Interminable and short.

Life is so short.

Except for the long parts.

You know the parts I mean.  The ones where someone is being born or when you’re watching someone die.  The abnormal days, the ones where you know that when it’s over life will never be the same.

Every day of the time you were sick was one of those days. From the minute I heard Daddy scratchy on the other end of the phone line telling me that you were at the hospital. From the first to third time I made him repeat himself because it made no sense, this thing that he was saying. Beydn has Leukemia.  It sounded dirty. That’s the only word I have for it. Leukemia. How was it even possible? The world upended into nothing.

When you were little, 3 and 4 and even after your brother was born, you and I would stay up late when Daddy went to bed for work the next day. You’d pick out books to read and sit on the arm of the recliner while your brother nursed to sleep. It was the time I got to really be with you. You’d press your body up close on my arm to stay on your perch, and we’d read Berenstain Bears. Caleb would fall asleep, and we'd pretzel our way out of the chair to take him to bed. You'd brush teeth with Sponge Bob tooth paste. The other one makes your mouth burn; it was adult toothpaste in disguise.  And when it was time to sleep “Lay with me” you’d con.  And I would.  And you would talk.  This was before cancer, before too cool kid syndrome, before Kansas.  The summer you were 6 years old.

I can’t remember all the things you’d tell me, just about some of them.  About wanting a little dog. No, you already have a dog, dude.  About swimming.  You’re a fish.  About your brothers. You know how to take care of babies. And your mommy. You need to call her tomorrow.  And playing with Kayla at your Mimi’s. I know you’re ready to go back there. About Kevin joking and holding you up to the ceiling fan. No, the fan can't chop you up. About what you want to do as a grown up. Race cars. Doctor dolphins. You can do absolutely anything you decide.

Sometimes I wouldn’t be able to wait you out. I’d wake up at 3 am curled at your feet in a ball. But usually, eventually, maybe two hours later, you’d be asleep.  I would pull the blanket up to your ears, kiss your head  in the red glow of your spiderman lamp, and tell you how much I love you.  Then, because it always seemed wrong coming from just me, I would make the list.  And Daddy loves you. And Mommy loves you. And Kevin loves you. And Mimi. And Kayla. And your brothers. And all your grandparents. And Aunt Jeneatta and Uncle Noah.  All your aunts and uncles. You’re so lucky to have so many people who love you, Beydn.  And you’re so good. Everybody loves you, buddy. 

This is what I used to tell you on a normal day.

And it’s what I told you on your last.