The Vara In The Mirror (SVJ)

Vara

The Vara in the Mirror

by Danielle A. Cloakey

 

This story is dedicated to and inspired by 11 year old childhood cancer warrior Vara, also known as Sweet Vara James (SVJ). She is fighting a relapse of Wilms Tumor – kidney cancer- and is so close to being done with treatment. Originally this story was supposed to be written for her birthday back in November, but since she will be done with treatment soon, I thought it would be nice to have it to celebrate the end of treatment. Special thanks to Vara’s mom Emily for putting up with endless and seemingly random questions from me! Vara, I hope you enjoy this story, and that it helps your imagination soar. I hope you always embrace the YOU you are at any given moment. Happy Valentine’s Day, sweet girl. May you always believe that the impossible is possible (after all, Audrey Hepburn said, “Nothing is impossible. The word itself says I’m possible”).

Vara gazes at her reflection in the mirror, and runs the fingers of both hands against her scalp. Peach fuzz! She wonders if it will grow back different. She has heard of that happening. Her hair before was just like Mommy’s, chocolate brown and a bit on the long side. Vara smiles at her reflection. She did it. She made it through the impossible a second time. And now, hopefully, she will remain healthy.

She holds her reflection’s gaze as she thought about all the good that came out of her being sick. She’s a voice for children with cancer. Who better to be their voice than me? I have been where they are, and I’ve been there twice.

She sees something strange in the mirror, a movement, and her breath catches in her chest for a moment. But nah. It couldn’t be. She shrugs her shoulders and looks down at her hands. When she looks up again – there! – she saw another movement.

“Who’s here?” she whispers. She wants to call out for Mommy, for Pinky, or for the dogs. She’s scared that she’s not the only one in the room, and she is scared that she is.

“Don’t be afraid, Vara.”

That voice sounds just like hers, except maybe older.

“There’s no reason to panic. I’m going to appear on your side of the mirror. Please don’t scream.”

The mirror gets blurry, and then there’s a popping noise, like popcorn popping, but louder, and a bright light temporarily blinds Vara, knocking her off the bench she was perched on.

“Whoa, whoa, whoa! Are you okay? I’m sorry. I should have warned you about the light. It’s just… well, it’s just been a while since I’ve had the chance to be on this side of the mirror.”

Vara rubs her eyes and tries to open them, but there is light leftover imprinted in her brain, and she just can’t yet.

She feels somebody kneeling next to her, and that someone takes both of her hands.

“Give it a moment. It will go away soon.”

“Who are you? Why do you sound like me? And how did you come out of the mirror?” Vara splutters.

“I’m you. An older you, in the future. Not just two years from now, either. It’s more like several hundred years ahead of you. And as for how I got out of the mirror, I just jumped.”

Vara’s mind races with thoughts that don’t make sense. She decides to peek. She sees her very own face, which, okay, was how she imagines she would look in two or three years time.

“But how is this possible?”

“Oh, believe me, it’s possible. I just can’t explain how. You’re you, and I’m me, and we are both Vara,” future Vara says, and she lets go of Vara’s hands and gets to her feet. She extends a hand to Vara.

Vara slowly takes it, and she is hauled to her feet. “Did you…” She trails off, wanting to ask but not wanting to at the same time. “Were you sick?” She finally says.

“Sick?”

Vara nods. “I had cancer. Twice.”

“Cancer?” the other Vara repeats. She looks puzzled. “Never heard of it. Well, I have, but just as a word to describe something bad. You know, a verb.”

Hope blooms in Vara’s chest, and she smiles so hard that she is surprised that her face doesn’t break.. If this is true, then there is hope. There will be cures. Cancer will be vanquished. She does a little happy dance. The other Vara raises her eyebrows.

“It’s why I barely have any hair,” Vara explains. “There was something in me that wasn’t supposed to be in me, and they gave me medicine to make it go away. That medicine also made my hair fall out. The first time I was sick, they took out one of my kidneys.”

“Wow, dude, you’re freaking Super Vara,” the other Vara says, and touches her on the arm. “You’re okay now, though?”

Vara nods. “We just got no evidence of disease on my scans. Hopefully I beat it for good this time.”

“I hope that too,” the other Vara says, and then she takes a deep breath. “I have something to ask you, and you probably won’t want to do it. If you don’t, it’s okay, and I’ll leave you be.”

Vara waits, her eyes on the other Vara’s.

“Would you want to jump to my time? I have something I want to show you.”

“What is it?”

The other girl hesitates, and then shakes her head. “I have to show you,” she says. “I don’t know how to explain it in words. Oh!” She sees the sudden worry in Vara’s eyes. “Don’t worry, V. It’s nothing bad, I promise. You’ll love it.”

Vara looks at the door behind the other girl, her mind racing. “Well, I don’t think my mom would let me,” she says lamely. “I’m only eleven.”

“You don’t have to worry about that. You will return to the exact moment you leave, so it will be like you never went anywhere. You’ll be fine, I promise. I won’t let anything bad happen to you.”

“Well, okay,” Vara holds out her hand, and the older girl takes it.

“Close your eyes,” she says. “When you open them, we’ll be there.”

Vara quietly obeys. And waits. And waits. Her feet never leave the ground. Confusion fills her head, but she still waits.

“Vara, you can open your eyes. We’re here.” The other Vara’s voice is sing-songy and it sounds far away. Vara’s eyes flutter open. She is surprised to find her older doppelgänger hasn’t moved. And then even more surprised at where they are.

There are similarities to Vara’s world – the sky is still blue, the grass still green, and there are buildings with people going in and out of them. But there are no streets, no traffic, and where there would have been streets, there were beautiful and colorful gardens filled with birds and their songs.

“Wow,” Vara says. “It’s so pretty. But how…” She shuts her mouth, realizing that the other Vara won’t know how to answer her questions. Yes, Vara, this is normal. It will be normal.

“Come on, we gotta catch the train,” the other Vara says, and holds out her hand. Vara takes it, and then they are flying through the gardens. Their feet barely touch the ground, and then they aren’t on the ground at all or even outside, but in a speeding thing that looks to Vara like those standing scooters that you pump your foot on the ground and gain momentum. But there is nothing – as far as Vara could see – to make the contraption go. She shrugs. She is more excited to see what the other Vara has in store.

💗 💗 💗

Vara follows the other Vara into the house and through rooms bright with sunshine and cozy with love. Pictures of this Vara decorated the halls, and the younger Vara finds her eyes lingering on the ones where she thinks Vara is eight, nine, and ten, the full head of hair in every image. She feels a pang in her heart, like this healthy Vara could have been her, should have been her.

No, she thinks. I’m happy. If I never had cancer, I wouldn’t know Sadie and Lily, and I wouldn’t have met Mike, and I wouldn’t be a voice for childhood cancer awareness. And it will get better. It just has to get better.

“So, V, what do you think?”

Vara turns to look, The other Vara had changed her clothes. She is now wearing yellow pants and a shirt, with a matching mask around her eyes. She is also wearing a yellow cape.

“Oh, cool!” Vara says. “You’re dressed as a superhero.”

The other Vara laughs. “Not just dressed as one,” she says, wiggling her eyebrows. “It has taken me a long time to control it, but I can make people do what I want them to.”

“Mind control?” Vara asks.

“I don’t like to call it that, because it doesn’t sound very nice, but yeah.”

“Have you done it on me?”

“Only so you wouldn’t be afraid when I came through your mirror,” the other Vara says, reaching out to touch the other girl’s shoulder, “It took me a long time to control it the way I do, and I’ve learned a lot of hard lessons along the way. The main thing I’ve learned is not to use my power for personal gain.”

“Yeah, that’s always a no-no,” Vara agrees. She can’t help but feel jealous though. “If I had the power to mind control, I would go to Washington DC and make people listen.”

“To what?”

“I would make a speech about how kids with cancer matter too,” Vara explains. “We don’t have kid size medicine. We are treated with adult size medicine, and sometimes it doesn’t work. It is probably why I had to fight my cancer twice.”

Super Vara nods. “I get it,” she says. She is quiet for a minute and then asks, “What is the craziest thing you can think of doing? The one thing you’ve always wanted to do?”

“Hmmm…” Vara says, thinking. Skydiving? No. Even crazier would be…

“Carpool karaoke with James Corden!”

Super Vara bursts into laughter, and it isn’t long before Vara is giggling right along with her.

When she could talk again, Super Vara says, “We might be able to pull this off.”

“Seriously?” Vara says excitedly. “How?”

“With a little bit of magic, of course!” Super Vara says and grabs the other girl’s hand. “Do you trust me?”

Vara doesn’t hesitate. “Yes!”

Super Vara squeezes her hand. “Okay,” she says. “Here’s what we are going to do…”

💗 💗 💗

Vara opens her eyes to her very own bedroom in her very own bed. Panic tears at her chest, and she bolts upright. There is a message written on her mirror and she scrambles off her bed, in a hurry to read it.

Vara,

It was good to officially meet you. Have fun, and don’t do anything I wouldn’t do! I’ll be seeing you.

XOXO

V

There’s a knock on her bedroom door. “Vara? Are you awake?” Mommy’s voice floats in from the other side, Vara hears the door knob turning, and she hurries away from the mirror so that her mother wouldn’t see the message.

“You are not going to believe this,” Mommy says, her eyes bright with excitement. She clutches her cellphone in both hands. “But James Corden is on the phone and he is wondering if you would like to carpool to school with him!”

“No way!”

Mommy nodded. “Way!” She gives Vara a onceover, and then shrugs. When you have fought so hard and so long for your daughter’s life, you learn to pick your battles. Vara looks okay in Wonder Woman leggings and an oversized childhood cancer sweatshirt. As always, Vara’s ever-present headphones are around her neck, and Mommy is sure her phone is in her sweatshirt pocket, where Vara’s right hand is also,

Vara squeals in delight and runs out of the room and bursts outside, remembering just in time to grab her school bag. Sure enough, James Corden idles in his car in front of her house. He leans over the passenger seat and opens the door.

“Hey, are you Vara?”

Vara can only nod.

“Then come on! We don’t want to make you late.”

She gets over her initial shyness quickly, She climbs in the car and throws down her bag between her feet.

“May I have your attention please? May I have your attention please? Will the real Slim Shady please stand up? I repeat, will the real Slim Shady please stand up,” Vara deadpans.

James looks surprised. “Oh, it’s like that, huh? Not wasting any time, are we?”

Vara shakes her head and pulls on her seatbelt. “Are we gonna go?” She asks. “Or… Are we going to have a problem here?”

James laughs for a minute, and then he pulls the car away from the curb. “Oh, I think we’re going to have a problem here…

And they rap and laugh and rap and then laugh again. It’s the best morning ever that Vara can remember. She knows, deep in her heart, that she will see Super Vara again. After all, she lives in Vara’s mirror.

💗 💗 💗

gold Crasher SVJ

Advertisements

The Promise of Christmas

I originally wrote this short story on this day in 2009…
 
The Promise of Christmas
by Danielle A. Cloakey
 
I hear the sound of carolers coming from outside the house, but don’t move from my prone position on the sofa. It’s just as dark inside as it is outside, and I hope fervently that the singing doesn’t wake the kids. I’m exhausted from trying, and I don’t think I can do it anymore.
 
It’s barely been six weeks, but people have stopped coming. They’ve given up. I wish I had that luxury. Since Kevin died, I’ve been focusing on the kids, his kids. Amy is maybe old enough she won’t forget her father, but what about the baby? Kevin won’t be there to see his son take his first step, or be there for any of the other firsts that parents get so excited about. It’s not fair.
 
“Why?” I ask aloud. Then I remember. I am not talking to Him.
 
I hear the baby stir in his bassinet across the room, but I don’t move. Maybe he’ll go back to sleep. But he begins to fuss and I reluctantly get up to prepare a bottle for him.
 
“Shh, baby boy,” I murmur as I pass the bassinet. I touch his bald little head for a fleeting moment.
 
O Christmas tree, O Christmas tree…
 
It is ten at night. What were they doing out there? I moved grumpily around the kitchen, taking care not to slam cupboards. There is no point in waking up Amy too.
 
Once the bottle is prepared, I go over to the bassinet and gather my son up into my arms. He quiets once the nipple of the bottle is in his mouth. As he drinks, I walk over to the front window and pull aside the curtains.
 
There is no one out there.
Creepy, I think. I could have sworn I heard carolers out there. I reach out my hand, nearly toppling the big lamp in an attempt to turn it on. Blinking in the light, I turn to walk back to the sofa. Just before I sit down, there is a knock on the front door.
For a moment, my blood freezes in my veins. I am alone, with two young kids. My husband is dead, currently residing in an urn in the back of my closet. I am not expecting visitors – never at this hour.
I want to peek out the window again, but decide not to chance it. Instead, I left the chain lock on the door as I cracked it open an inch.
On the first day of Christmas, my true love gave to me a partridge in a pair tree.
On my doorstep, there is a young man who looks like every painting I’ve ever seen of Jesus, except for his attire, that is. His longish light brown hair hangs about his broad shoulders under a white knit cap. He is tall, and his blue eyes gaze serenely down at me. He is bundled up in a white parka, white leather gloves, blue jeans, and white snow boots. A white scarf made of cashmere is wrapped around his neck and knotted just below his chin.
“Hello,” he says. “Don’t be frightened. I won’t hurt you or the children.”
“How did you know – “ I begin to say, and clutch the baby a little tighter. “How do you know I have more than one child?”
He smiles. There is nothing threatening about him, I decide. “I live just down the street. I am new to this neighborhood. Anyway, I’ve noticed that you haven’t done anything about Christmas.”
“Christmas?” I am confused.
“It’s tomorrow,” he says gently.
“Oh. Oh no,” I groan, thinking of Amy waking up in the morning to the same cold living room she sees every morning. Imagining her disappointment is too much.
“Don’t worry,” the man says. There is a twinkle in his blue eyes. “I’ve got everything you need. A tree, decorations, the works. I even brought over wood for the fireplace.”
“Just a minute,” I tell him, and hurriedly shut the door to unhook the chain and opened it again, this time wider. “I’m Ana, by the way.”
“Anastasia, I know,” he says. “I asked around. I am very sorry about your husband. I understand it was quite sudden.”
For a moment, I am lost in the horror of my memories: hearing Kevin start to call out my name, and then nothing. Then a thud as Kevin’s body hit the bathroom floor. I raced to his side, but by the time I got there, he was already gone. I remember screaming his name over and over, and then finally coming to my senses and calling 9-1-1. Brain aneurysm. Nothing anyone could have done. He was here one moment, gone the next.
My eyes fill with tears, and I blink them back. The man reaches out and touches my shoulder. “I’ll be back in a few minutes. I have to get the tree.”
“Yes, of course,” I murmur. “Wait. I didn’t catch your name.”
He turns to look at me. “Call me Jay,” he says. “I’ll be just a minute.” And he vanishes into the darkness of the night.
In my arms, Kenny lay blinking up at me, his expression sleepy. I gently pull the bottle out of his mouth and shift him up to my shoulder to pat his back.
“Where are your ornaments?” Jay is back and he hefts the tree to lean against the wall and shuts the front door.
“In the garage,” I reply.
“And I am assuming you have a tree stand?”
I nod. “All of that stuff is in the garage.”
“I’ll find it,” he says. “Then I’ll come back and start a fire for you.”
“That would be nice,” I say, smiling at him gratefully. “Thank you.”
By the time I cross over to the bassinet and lay my sleeping baby down, Jay is back, busily straightening out the fireplace, arranging logs just so, and lighting the fire with a candle lighter.
“This is so nice of you,” I say, awkwardly.
“Just being a good neighbor,” Jay looks up at me and smiles. His eyes twinkle with warmth and light and something else. Is it love? I am not sure. “Besides,” he continues. “When I thought of how crestfallen your little girl would be in the morning if she woke up and discovered that Santa Claus had passed her house by, it just broke my heart.”
I am striken with guilt at his words.
“Don’t feel bad,” he says gently. “This is what a brother is for.”
“I will pay you back,” I say. “Every cent. Kevin’s life insurance policy…”
He shakes his head. “I won’t hear of it. Consider this a Christmas present from me to you.”
“Are you sure?” I watch him cross the room to the leaning tree and grasp it with both arms. He didn’t reply. “Okay, well, thank you. Can I make you a cup of coffee or cocoa? Can I take your coat?”
Jay pokes his head out from behind the tree. “Cocoa would be nice. Let me get this tree standing upright and then we can decorate it together.”
“Sounds like a plan,” I say, and hesitate only briefly before leaving this stranger alone with Kenny and then going to the kitchen and filling the kettle with water and putting it on the stove.
“Whipped cream and cinnamon or marshmellows?” I return to the living room to ask.
Jay grins. “Surprise me.”
I can’t help but smile back. “Okay.”
When I return with two steaming mugs topped with whipped cream and cinnamon, Jay has his coat hanging off the banister, gloves peeking out of the pockets, and his scarf dangling on top of the coat. His white turtleneck sweater seems to glow with an unearthly light.
“That’s strange,” I say.
“What is?” he asks as he takes his mug from me.
I open my mouth to say something about his sweater, but the light’s gone now. I shake my head, thinking that being tired is causing me to hallucinate. “Never mind,” I mumble.
We sipp our cocoa in silence for a few minutes, and then I ask, “So where did you move here from?”
“Pardon?” Jay looks at me, puzzled.
“You mentioned you were new to the neighborhood,” I remind him.
“Oh, right,” he says, and then is silent.
Finally, I say, “You don’t have to tell me. It’s none of my business anyway.”
He looks at me as if he wants to say something, but then decides to change the subject. “Ana, what did your daughter tell you she wanted for Christmas?”
It’s my turn to be silent. I look down at my lap, ashamed.
“Ana.”
My eyes fill with tears. “I don’t know,” I wail. “She must have told me, but I wasn’t paying attention. I am such a terrible mother.”
“Hey,” he says, setting his mug aside and coming to sit by me. “You’re not. You’re just doing the best you know how to do.”
I brush away my tears, embarrassed to be crying in front of a stranger. “It’s not enough, though. I have to be both father and mother to the kids now. It’s not fair.”
“Hey, now,” he says gently. “If life were fair, then it wouldn’t be life, now, would it?”
My eyes meet his. “I don’t know. I guess not. At least…” My voice trailed off.
“At least what?”
“At least it wouldn’t be life as we know it, how we are used to it.”
He smiles. He has such a beautiful smile. “You’ve got it, Ana.” He says, and turns to a big red velvet bag he must have brought in when I was in the kitchen. “Not to worry, though. I’ve got one of everything. The latest things on the shelf.”
“Oh, no, you didn’t,” I begin, but he holds up his hand.
“I don’t want to hear it,” he says, and then stands up and offers me his hand. “Let’s decorate the tree.”
I put my hand in his, and he pulls me up. He has already untangled the lights and quickly gets busy winding them around the tree. I open a box of ornaments, and start putting them on the branches.
“Oh, I almost forgot,” Jay suddenly exclaims, clapping his hands like a little boy. “I know you probably didn’t get one, so I got Kenny a first Christmas ornament.” He presses something in my hand.
It is a little blue and white bassinet with “Baby’s First Christmas” written on it. The year is below it. The ornament is beautiful.
“This is a dream I am having, isn’t it?” I look up at Jay. “You aren’t real. You can’t be. You are too good to be true.”
“Yeah, I get that a lot,” he jokes. “Come on, let’s get busy. It’s almost midnight, and I know you’re tired.”
So we decorate the tree to Christmas music he had put on low volume on the stereo. “Oh, this is one of my favorites,” he says, and hums along with Silent Night.
“Mine too,” I whisper, and look at the bassinet. He sees me looking and smiles. “You don’t need to worry. God is with you.”
I am startled. “God?”
“Yes,” he says. Then he sighs. “I know you’re angry with Him.”
“Yes. How can I not be?” I demand to know. “He took away my husband. My kids have no father now.”
“Ah, but that’s not true,” he says. “God is their Father.”
“No. I am talking about a flesh and blood father. A father they can see and hear.”
He clears his throat and looks at me sideways. “You don’t seem to be having any trouble seeing and hearing me.”
“What?”
“It’s like I said, Ana. God is with you, whether you realize it or not. He’s never going to leave you. This world, oh, I know how this world can be cruel sometimes. But you don’t have to fight your battles alone. If you just let him in, Ana, he can take your hurt away.”
I am silent, but my mind is a whirlwind. I am dizzy, so I lay down right there on the floor and put my hot cheek against the cool hardwood. I feel His arms around me as they lift me up and carry me over to the sofa, where they gently release me.
“I’m here, Ana. I’m here. I’m real.”
And this time the tears come in floods. I cry and cry and cry. I cry for Kevin, for Amy, for little Kenny, but most of all I cry for me. I cry because I was so lost, but now I am found, thanks to this mysterious stranger, who is now no longer so mysterious. I know exactly who He is, and what’s more, I believe it.
“I do, I believe it,” I sob. “Thank you, thank you, dear God.”
There is a sensation of a hand on my cheek, and though I try to fight it, a dreamless sleep claims me.
“Mommy, Mommy, wake up!”
My eight year old daughter’s voice pulls me into consciousness. Sunlight streams in through the windows. I open my eyes to the brightness and try to blink it away. Amy’s face comes into focus. Her radiant, happy face. Oh, how I have missed it!
I grab her in a bear hug and cover her face with kisses. “Mommy, stop,” she protests, but she is giggling. “Look! We have a tree! And presents! Santa Claus came!”
It is true. Santa Claus came in the middle of the night and did his magic. I smile at Amy and go to take care of Kenny. Once he is taken care of, I stand at the window, craning my neck to see the house that was for sale down the street. Yes, the For Sale sign is still there.
“But it wasn’t a dream,” I assured myself. “The tree, presents, and decorations are still here.”
Amy is diving into her pile of gifts with enthusiasm. She squeals with delight. “Look, Moomy, this one is for you!”
She hands me a small box wrapped in festive paper and tied with a red ribbon and bow.
“Well, what do you know?” I say.
“Open it.” Amy orders.
And I do. Inside, there is a beautiful sterling silver cross pendant on a silver snake chain.
When I lift it out, I find a little folded note behind it.
Anastasia, it reads. The promise of Christmas is that God is with you. That is what my name, Emmanuel, means God with us. God with you. And where God works, there is always hope. Hope everywhere, since there is no place where My Father does not work. Love, Jesus
I look up. On the mantle there is a Nativity set. The manger is empty, I know. I don’t know how I know it. And suddenly, I know just where to find the baby.
Pocketing the note, I stand up and go to the front door and open it. Looking down, I am pleased to find my hunch is correct. The tiny baby Jesus is resting on the doormat, just waiting for me to bring Him in out of the cold.0
0
I bend over and pick him up up as carefully as I can. “Come in, Jesus,” I whisper. I step back inside, and close the door. I return the little sculpture to the manger, and gather my own infant son into my arms. We join Amy on the floor.000000
“Look, Mommy! Look what Santa brought me!” she exclaims over and over. To her, toys are important, but someday, they won’t be. Someday, she, like me, will know there is more to Christmas than presents. And so will my son.

Dear Santa, take cancer, leave cures

2017-11-20 09.52.50

I know it’s a joke, but those shirts that say “Dear Santa, leave presents, take sister” or “Dear Santa, leave presents, take brother” are highly insensitive.

Childhood cancer is a reality for many of my friends. Most have lost children to it. It’s not a joke to them. I can try, but I cannot imagine how much it hurts them to see these type of things when they are out and about.

I am so sorry that the world continues to look the other way while you’re here screaming yourself hoarse about something that would be so easy to fix if more people cared and helped…

Are you saddened over a celebrity who died? I’m more upset over a 3 year old whose life was stolen by cancer. His name is Ronan. I am more upset over the 10 year old who didn’t want to die, but her cancer was terminal. Her name is Gabriella. I’m more upset about the 7 year old who beat her cancer, only to succumb to heart failure because one of the drugs she got destroyed her heart. Her name is Macie. I could go on and on… all those children who have died because of childhood cancer are many. What about the three year old boy who just passed away because no doctor could offer his mother hope? They actually refused to help her help him because they thought it was fruitless. And maybe it is. Maybe it was. But his name is Ayden. He was here, and now he’s not. All these children were.

Those shirts I see in the stores? Ask any sibling who has lost a brother or a sister to childhood cancer or something else if they’d rather have presents or their brother or sister back.

The latter would be the BEST present ever, I am telling you, if only it were possible.

The Word “Survivor”

21404b87a829d148a1abc7c2f533063a.jpg

I have decided that I do not like the word survivor.

I understand, of course, that there are childhood cancer survivors who wholeheartedly embrace that term and everything it entails. I don’t wish to detract from that.

However…

I do not remember a single second of battling neuroblastoma. It’s hard to feel empowered by something that you don’t remember.

The term “survivor” implies, to me, that I did something to earn the right to be here today. And I didn’t. I was two! I was one year old when I was diagnosed. I was two when my treatment was finished with me (I wasn’t done with my protocol yet when the viral encephalitis damaged my brain stem). I didn’t know what I was doing. Does anyone know what they’re doing at age two?

I may have a bad case of survivor’s guilt. Right here. Smack dab in the middle of my chest. Sometimes it leans a little too heavy to the left, splintering my heart. Why? Why am I still here when so many others aren’t? Surely someone else would be doing a better job at this than me.

I probably will never understand what I want to so desperately – what it means to be a survivor. I ofter my heartbeat as hope to others but I truly do not understand why people see hope in me. Me, in this broken body. I try. I try so hard. But it’s all so exhausting and I can only do so much.

I’m stuck. Why are things not different? Why do the people who could bring about real change ignore our pleas for help? Why do we have to beg for children’s lives to be saved? I will never understand. The doors slammed shut in our faces. Hope receding, and then growing, and then receding again.

I am so tired. I’m so tired of repeating myself ad nauseum. Look! Look, people! Here’s a dying child! He doesn’t have to die. Here’s another. She doesn’t either. But reality is reality, and they die. They’re dead. Because of you. Because you didn’t listen. Because you thought, oh it doesn’t affect me (YET!) so it doesn’t matter.

But what happens if it does affect you? You will wish you have started today. No, yesterday. Maybe even years ago. If you had, maybe there would be a cure by the time you need it.

See. See! That is the point. That was always the point.

We are not just fighting for the children who are sick now, but for the children of tomorrow who will be sick. And you were silent. You say you did not know, but oh, you did! You just chose to look away. Too sad. Too hard.

What if it was you who was too sad for people to deal with? What if you were too hard?

Think about it.

285 children are diagnosed with cancer every single day.

Every single day, there is a lottery no one wants to play but are forced to. If your name is not drawn, you get to breathe again. If it is, your world, and your child’s world, will turn upside down and inside out.

Is that what you want? You want it to be too late?

Call your senators and ask them to support the #STARAct.

That’s a start. That would be fighting for the kids, getting them what they need. And maybe one day, the word “survivor” won’t feel wrong to me.

STAR Act

IMG_20171108_213244.jpg

The #STARAct needs more Senate cosponsors. It’s the most detailed childhood cancer bill we have ever seen, and we need to get it passed. It was up for a vote last year, but didn’t go through. This meant we had to start all over again getting support for this bill. Please give your senators a call and ask them to cosponsor the bill.

“The STAR Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.” ~ Four Square Clobbers Cancer

I am a childhood cancer survivor. I fought neuroblastoma as a toddler, and it changed everything for me. I always say that I wouldn’t wish my childhood on anyone, and this is why, at age 36, I am still fighting.

It’s the same battle, but different too. Instead of fighting for myself, I now fight for others. Why, you ask? Because nothing has changed since the early 1980s when I was sick. Childhood cancer research only gets 4% of the National Cancer Institute’s annual bugdet, which means that children with cancer are treated with made-for-adult drugs that wreak havoc on their still growing bodies. Childhood brain cancer has become the #1 disease killer of children. There aren’t any pediatric brain cancer drugs. There are just 4 childhood cancer drugs that have been developed since the 1980s. Compare that to the 190 adult cancer drugs, and you can see the problem.

Every single day, more than 40 kids are diagnosed with cancer. And every single day, 7 more children die. That’s just here, in the United States of America.

If all you know about childhood cancer is what you see on the St. Jude Children’s Hospital commercials – the happy, smiley bald kids – I implore you to look deeper. Do your research. Not everything is what it seems to be. Childhood cancer is kids screaming and thrashing about while doctors and nurses physically restrain them so they can access their ports – to give chemo or draw blood. It’s nights spent vomiting and crying. It’s little bodies bloated because of steroids given to counteract the effects of radiation to the brain. It’s questions from little mouths that strike terror in parents’ hearts because they don’t know how to answer. It’s a child who survives her cancer but succumbs because one of the drugs she was given damaged her heart in irreparable ways. There is more horror.

There is so much injustice here. And you… you can help. All you have to do is stand up and say, “This is wrong. How can I help?” And I’d tell you. You help by listening. You help by speaking out against this, speaking up for the children. This is happening because children don’t have a voice – they don’t vote – but with your help, we can change that. Let your voice be theirs. Let your vote be theirs.

They just want to live. They just want to be children. We can help them live. We can help them be children.

When I See You Again

FB_IMG_1491234852117

This is Kylee. She fought the same monster I did – neuroblastoma – and she lost her life to it. Her mama Misty reached out to me on Facebook, and we’ve ended up with a deep friendship. I wrote a little bit of the following post last March, when Kylee should have been turning 7. This year, Kylee has been gone for the same amount of time as she was here, and Misty asked me to repost this story (again, I only had the first couple paragraphs) on March 23rd, Kylee’s 8th birthday. I asked her if she’d like me to write a little more to this story, and she said YES!

And so here goes… For my beautiful friend and soul sister Misty and and her amazing Kylee with BIG LOVE!

When I see you again, I imagine you’d look just like this. You’d look up. You’d smile. You’d stand up and run into my arms. I’d kiss your little face like there was no tomorrow and squeeze you until you squeaked in protest. And then, you’d insist on showing me around. It’s safe here, and you were waiting for me.

“I think I only left you yesterday,” you’d say, “but I know for you it was longer. Come on, you gotta meet my friends!”

And you’d take my hand and pull me along. And it’d be okay, because I had you in my arms again, and the memories and hurt of the times you weren’t were already fading.

“You okay, baby girl?” I’d ask, and I think I’d keep on asking it because I’d have trouble believing that this is real, that we were together again.

“Mommy, look at me,” you’d say, and I gaze upon your pixie face, the face that was healthy again, full of light and laughter, and all the things you were, once upon a time.

“Kylee,” I’d say. It’s strange that I don’t cry, but maybe here in this place, there would be no need for tears.

You’d smile then. “It’s all right,” you’d say. “What happened to me doesn’t matter anymore. I know you fought for me. And I know you always fought for me, even when I wasn’t there, even when you couldn’t feel me. I know it was hard without me. But you see, there’s no need to be sad anymore.”

I’d get down on my knees and look you in the eyes. “I’m not sad anymore, bug,” I’d say. “But our family…”

“They will join us when it’s their time,” you’d say, your tiny shoulders shrugging. “We can watch them in the pond. I have a garden here, Mommy. It’s a garden just for me. But if you want, I’d share it with you.”

You’d tug me to my feet, surprisingly strong for your small size.

“You have a garden?” I’d ask when we start walking again.

You’d smile, and do a little skip, your free arm flinging out, your right hand clinging tight to my left. “It’s a ladybug garden!”

“Oh, really?” I’d say.

“Yes, Mommy. You can have anything here. All you have to do is think of it first. You can’t wish for anything bad, though. That’s the only rule.”

“Is this… Heaven?”

“Part of it,” you’d answer. “It’s bigger than you think because everybody comes here. Bigger than earth.”

I’d want to keep you talking, could revel in the sound of your sweet little four year old voice for all of eternity. You’d not age, and maybe, a little voice inside me whispered, you were waiting for me to celebrate your fifth birthday. The thought breaks my heart. It’s been decades on earth since you left. I touch my face with my free hand – my other was holding on to you – and felt my smooth skin.

“Look over there!” You’d shout then, dropping my hand and waving both arms over your head. “There are my friends. HO HEY!” You’d shout the last part and when the children in the distance saw you, they’d start waving back.

“My mommy’s here! Come join us in my garden! We’re having a party!”

“Party?” I’d ask as we walk.

“It’s what we do here when somebody comes home,” you’d explain, and you lead me past perfectly manicured lawns, houses, and other buildings, as well as buildings that weren’t for living in. I wouldn’t look too closely at my surrounding because I’m too enamored with you.

“Look down,” you’d say. “Look down at what you are walking on.” And I do, and my breath catches. Should you even breathe here? I can’t speak so I don’t ask. Maybe later.

Gold. Golden, shimmery streets. My worn out shoes look pathetic standing on it, and the moment I’d think that, the shoes disappear and are replaced by the most comfortable purple slippers ever.

I’d look at you. “Did you do that?”

You’d shake your head. “You can make things happen here just by thinking it,” you’d explain. “But you have to be careful. The angels are very strict about not doing things for personal gain.”

“Angels?”

“They will be at the party,” you’d say happily, and then you’d pull me into your garden. And I’d be surprised, but not, at the same time.

It was a ladybug garden, just as you’d said. Ladybugs scurry visibly on leaves, on the picnic tables, even on the fence.

You allow me two heaven seconds to take it all in, and then you lead me over to a pond in the middle of the garden.

“Show me my family on earth,” you’d demand, and the water would begin rippling even though nothing was happening to it. And then… and then… I’d see my three other children, and my husband, sitting in my backyard – well, it’s not mine anymore, I guess – talking, laughing through their tears. They miss you. They miss me. And yet, I’d feel peace because I am with you again and everything’s all right.

🐞🐞🐞🐞🐞🐞🐞🐞

A Case For Childhood Cancer

FB_IMG_1491162311700

We used to live on a cul-de-sac when I was younger, and every night in bed, I used to pretend it was a train taking me far away. And every morning, I’d be in the exact same place with the exact same problems.

I’ve never shared this before. It was mine. It was how I coped with being stuck in a body that I viewed as broken. How I coped with being a survivor of something I could not remember. Every day, a new place. Every day, another chance to be whole. Except it never happened. It was all in my imagination.

Imagine the thing that tried to kill you when you were a child being allowed to run rampant. Think of it as a serial killer, because that’s what cancer is. And nothing is really being done about it! It’s killing babies, toddlers, young children. It’s killing kids before they have a chance to be teenagers. It’s killing teenagers before they really experience life.

And it’s not okay! It could be your child. My story could be your child’s. Stage 4 neuroblastoma. Chemo. Radiation. Viral encephalitis. Damaged brain stem. Permanent disabilities. Hearing loss. Speech impairment. Scoliosis. Surgeries. All before I turned three. And then when I was 9 or 10, my back was bad enough to warrant a brace, which I had to wear 23 hours a day for about 5 years. It wasn’t fair.

I cried nearly every single day because I didn’t understand. I didn’t understand why I was like this. I didn’t understand why I couldn’t make myself be better. I looked at my siblings and my peers and it all looked so easy… and yet, I couldn’t do any of the things they were doing. So I escaped. I loved reading so much I started writing my own stories, creating my own worlds.

And I’m still doing that today. But I also live in the real world too, where kids are being diagnosed every day and dying too. I see this and it breaks my heart. I don’t think it was ever supposed to be this way, but it is. Back when I was diagnosed with cancer, my parents accepted what the doctors told them – that childhood cancer was rare. Today, we have the internet though. And social media. And I know better than to believe what the doctors say. My eyes and ears and heart are telling me different. My head is telling me different. My friends are either grieving for their children or fighting for their children’s lives. And you know what else? They are also the ones fighting to get more money for research AT THE SAME TIME they are fighting for their children and/or grieving. It’s a way they can continue taking care of their children after their babies are gone. But the truth is, they shouldn’t have to. Their children should still be here.

The National Cancer Institute only reserves 4% of federal funding for childhood cancer, with adult cancers getting the rest. There are 16 different types of childhood cancer, with 100 subtypes. How in the world is 4% enough to cover that? Brain cancer in children is often terminal. They are treated with made-for-adults drugs because there is not enough money for targeted treatment. And sometimes these drugs kill them. Sometimes they leave the children with long term side effects. Cancer does not discriminate. Any child can be diagnosed. Approximately 43 children are diagnosed every day. 7 more children die every day. Tomorrow, it could be your child, or a child you know. And that’s just here in USA. Worldwide, the number grows. Please stand up as fight for the children.

You can help be their voice! I realize there are a ton of worthy causes out there. But please, if you care about the future, if you care about children, please go like TheTruth365 page on Facebook and read some of the stories there. If you are on the east coast, there’s an annual Curefest Weekend September 16th and 17th in DC at the National Mall. I went last year for the first time despite living on the west coast. It was amazing. There’s a march. There’s a candlelight vigil at the White House. There’s a walk around the Mall. And there’s speeches, booths, etc. I’m planning on going back this year, and we are hoping it won’t be just us advocates there. We need the public involved to make our voices louder. We need a worldwide movement like the Women’s March that took place in January.

Come join our movement. Come listen. Come learn. I always say I would not wish my childhood on anyone, and I will keep on saying it. Forever, if necessary. I’m a childhood cancer survivor, yes, but I never should have had to fight that way. I shouldn’t have to live this way. Childhood cancer is a reality for many. Please don’t wait until it is yours too.