Category Archives: Non-Profit

“I feel bad.”

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It’s late and I should be sleeping, but there are just moments in life that ask to be written about.

Tonight was a Brighter Tomorrows night. Those who know me know this is my favorite night of life, every single time it happens. Those who don’t know me now know that it’s my favorite. Moving on.

We had 37 kids RSVP. That’s amazing to me. I don’t want kids to have cancer, but if they do have cancer, I do want them to come to Brighter Tomorrows to play games with us, to laugh with us, and to have summer camp with us once every month.

One conversation (among the many that are seriously the most inspirational things in life) tonight struck me and just keeps playing over and over again in my head. That’s why I am writing and not sleeping.

There is a 7 year old boy with Ewing’s Sarcoma, a rare form of bone cancer. I know most of his story because I’ve read it, met his family, talked with others who know him. But he doesn’t know that. He just thinks I know him for him. So we’re making some crafts and I mention that he still has his port accessed (most of the time kids don’t leave with a line in if they are just going for chemo) and I ask him why that is. He tells me that it’s for radiation and goes on to explain the burns that he has from it.

He rolls down the edge of his comfy pants, and I see the red line where that burn starts. I ask him casually if it hurts (because to him, cancer is casual and a part of life…I remember) and he says “Nope, not at all.” I’m sure at some points it does because his skin is all a deep, deep red and has a rough look to it, but he gave me the right now answer which is technically what I asked for. (Kids are amazing and I love them.) Then I go on to explain to him that I had cancer as well. I explain my leg and why I didn’t need any radiation and why he does but how we are similar. And then he listens and he and his brother start asking questions.

“Do you have a scar?”
“Yes, one here and here and here.”
“How did they hook it back on?”
“With a plate and screws.”
“So you have metal on you?”
“Well, sort of. Technically I have metal in me.”
“Does that hurt?”
“Nope, not at all, and it keeps my leg on there safely.”

We giggle.

He persists…

“Does it hurt to wear your leg?”
“Nope, it’s made just for me.”
“So your foot is just in there like that, huh?”
“Yes, just like you’re doing it!”
“Wait, so you lost your hair!?”
“I sure did.”

He stops.

“I feel so bad,” he says.

I tell him not to. He tells me he feels bad for me. I tell him I’m okay and everything is good and life is great. He insists that he feels bad for me.

Life is about perspective, my friends. Look without yourself.

…because love wins.

17 things I learned in the 17 years since I was diagnosed with childhood cancer.

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March 11, 1998.

We never forget the days that change our lives. We never forget the moments that change our lives, as a matter of fact. I had one of those on that day. I haven’t forgotten it. I never will.

I had been walking with a limp for about 3 weeks. I was a totally healthy, vivacious, excited little girl. Here’s a picture!

Age 6. :)

Age 6. 🙂

See? Right? Totally healthy. But that knee pain I had wouldn’t go away.

On March 11th, 7:35am, I was walking to the school bus. About halfway there, I fell down. There was a serious sharp pain in my left knee. I remember thinking I didn’t want to look dumb (classic 3rd grade thought process) and it hurt. A lot a lot a lot. The bus was waiting, and it was a shorter distance to get on the bus than to go home, so I got on the bus. I went through my day, limping along, trying not to walk. I have no idea how I was even moving at all.

We had an appointment scheduled with my family doctor that afternoon. When I walked into the office, he told me that he hadn’t seen anyone ever limp like that. The reason? My femur was shattered. The reason?

Bone cancer.

I was 7 years old. I played basketball and giggled and tried to avoid going to sleep at night.

Cancer?

CANCER?

The next day started 49 weeks of chemotherapy, the removal of my leg and a procedure called Rotationplasty (You can learn about that here.) and way too many sharp needles, anesthesia and brokenhearted moments than I can consciously remember or that I should have had to go through as a human being, regardless of age.

So, in honor of the days that I have lived (happily) since then, I want to share with you 17 things that I have learned since March 11, 1998.

1. Life is short. 
Not in the cliche, “Yeah, people say that all the time…” way, but in the “Don’t wait until someone you love is dead in a car accident before you figure this out.” way. Seriously, it can all end right now, and you need to not worry what everyone thinks of you or feel bad when people don’t like you. Choose the way you want to live those short days and then do that. Live, please.

2. Kids die. 
And it sucks. It sucks way worse than someone who has lived to 80 years-old dying. I’m not saying any one life is more important than another, but I am telling you that burying my best friends (4 of them) by the age of 12 is horrendous and wrong. It’s so so so so wrong. Parents should not have to live all the years their kids were supposed to without them. Which leads me to…

3. There is a pathetic amount of money allotted for childhood cancer research. 
I had 49 weeks of poison (chemotherapy) that potentially ruined my heart, potentially took my ability to have children, and certainly made me throw up burning vomit way too many times. The saddest part is that it’s been 17 years and kids today are still taking the exact same awful drugs. With an 80% survival rate. (Which I would say is definitely much lower than 80.) And they haven’t figured out why a lot of my friends never lived and I did. There aren’t many people who took this stuff and grew into adulthood, so there’s not really a way for me to know what my future related to this stuff will bring. Please help. Follow this facebook page and do what it says: TheTruth365.

4. Haters are gonna hate.
There is a saying that goes something like, “In the world people are going to hate you, and people are going to love you, and none of it has anything to do with you.” People make bad choices when they’re mad or scared or stressed. (Thanks, Frozen!) So be graceful and don’t worry too much.

5. God is everywhere. 
You just have to let yourself listen. Even when the truth hurts. Especially when the truth hurts.

6. Illness isn’t terrifying.
Sometimes it is, I suppose, but for anyone who is the friend of someone with a chronic or serious illness, don’t leave said person or family alone. And don’t be upset if they want space or you say the wrong thing. But answer the phone at 2am, expect nothing, give real hugs, and be willing to be whatever they need.

7. You should love yourself. 
There is a complex that tends to come after someone has been through a near-death experience which includes putting everyone else first. And then putting everyone else first until that person is basically dead from never paying attention to themselves. So it’s good to take care of yourself. Paint and laugh and don’t let people use you. You deserve the best too.

8. I am handicapped. 
Lots of people are. In fact, we all are – face the fact. We all have something really wrong with our broken souls. And I think that’s a really important thing to remember when someone can’t help themselves and you have the opportunity to love them.

9. It’s not easy to talk about pain. 
I’m a professional speaker, but that doesn’t mean that it’s easy to talk through the agony that I experienced. There’s this fine line between people wanting to hear the truth and people thinking you’re asking for pity by sharing what you’ve felt. Pay no attention to those people. If you have pain, talk about it. If they choose not to listen, they lose.

10. People won’t always leave, and they won’t always leave you.
There’s my greatest fear. Now you know that. (Yay vulnerable!) I’m sure this grew from holding my friends’ hands while they died and thinking I would never be fully understood again, but in the years since that and some wonderful people in my life, I have learned that people won’t always leave. And I have learned that some people really really want to stay and love me if I let them be inside my heart. Give people a chance.

11. Healthy food isn’t just a fad. Tubing 2
Having a life threatening illness was pretty awful. But it also benefited me in great ways. Because I don’t like toxins because of that experience, I avoid them. And I am pretty particular about taking care of myself with what I put inside my body. And I know I live a more full, happier life because of it. Eat less Doritos and more broccoli. It’s worth it!

12. Downtime is not wasted time.
I laid in my bed for a really long time when I was sick. Like, about a year. And it’s clear that that time has not been wasted, even though I was doing nothing for 49 weeks. You’re human. Slow down. Life will come to you.

13. Sometimes hope just doesn’t feel real. 
There will be times in your life where you can’t hope. Where you realize that the thing that you have been hoping for for so long just isn’t going to happen. And that’s okay. Give up, cry, get mad, do whatever you need to do. Just because we don’t think there is hope doesn’t mean there isn’t. And it doesn’t mean that the days won’t get brighter again. They will.

14. Tie your brain to your heart. 
If you want to do something that really helps people, don’t just dream. Figure out what skills you need to tangibly do the work. For example, if you want to travel the world and feed homeless, start learning languages now. If you want to start a business, learn how to start a business. And then put your heart into your intellect.

15. Don’t take boredom for granted. 
I remember being 15 and telling my parents I was bored. But then I realized that I may be bored because my life is just okay at that time. And it’s not falling apart. And that means there’s goodness – and that’s not boring at all.

16. Bad things can still be bad years later, but they don’t have to rule you. 
I realize that there are some things from cancer which totally left me with PTSD. That’s the reality for my life, and I’ve accepted it. That’s pretty lame, but so are tsunamis, and I haven’t been through one of those. And some other people have to accept them in their lives. So it’s okay to not like things that happened to you. But that doesn’t mean they are in your now, or that they will take you down. Nah, there’s always healing, and always growth. And you’re good now. Just learn and live.

17. Jesus loves you. Jesus
I have tried this one out. I have searched the depth of my heart and society many times. I have watched people die, kids without parents in hospitals, and kids around the world who have no medical care and die just because of that. And there is still love – and love is the currency we should really use. Jesus is the only way to God, and there is one God, and He is Jesus’ father. And you know what? Whether you know it or not, He loves you. And He’s going to come back. Don’t wait to talk to him until your life doesn’t make sense anymore. Someone will always, always love you.

Here’s to 17 more years!

Love to you all.

…because love wins.

This is what depression feels like.

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Wake up.
Crap. I hate this. I don’t even want to get up. 
Lay there. Try to sleep again.
Can’t sleep. This sucks. Why even get up? I hate everything anyway. 
Alarm goes off again.
Just…no. 

Deep breath.
Well, I have to. People expect it. But *sigh* nothing is good. 

The feeling sinks more in as the tired wears off and the reality that there is no energy to come shows up again. Another day, after another night where you thought you’d go to bed and wake up okay. Another morning where you cannot understand why you can’t get it together.

I don’t want to brush my teeth. 
Sit on couch. Stare out window. No thoughts.
I can’t brush my teeth.
Lays back down.
Please, don’t let anyone come and talk to me.

Mom shows up. “Time to get up!”
She makes me so mad, but okay.

I can’t do this. 

The fog grows darker and darker as you realize that you haven’t the strength to even get dressed, let alone try to put on a disposition that you care about something in the world. The fog that takes away what you do enjoy, and leaves you begging to just enjoy something again.

Get dressed from the unorganized clothes.
I’ll get to those tomorrow. 

Work.
Come on brain, concentrate. Please, just concentrate. 

Rubs eyes.
Can’t concentrate. WHY CAN’T I THINK!? 
What’s even the point? 

Tears.
Phone call to mom.
I can’t do this. 

“You can do this.”

I can’t do this. I can’t do this. I can’t do this. 

The walls start to crash in. You feel like an idiot because nothing is wrong, but everything feels dead, teary-eyed, and purposeless. You want someone to call and check on you but you couldn’t speak with them even if they did. You’re just…exhausted.

You make it through another day, somehow.

Go home. Empty house. Feels like your heart.

Who cares about TV? Why are there always so many dishes? I hope no one calls. I have to try to get this house in order. 

Sit on couch. Exhaustion piles on thick. Tired eyes, no reason to stand up, achy body, and every negative thought ever.

You won’t be able to do this. All of your friends are going to leave. Your family won’t want to be around you. You can’t be real with these people or else you’ll just sit here like this really alone. You’re a mess; get it together. 

No dishes, no cleaning, just begging for bedtime. But knowing 7pm will always be too early. Lay there awake and in aching misery for a while more. Cry, if you’re not too tired to.

Please, God, let it be better tomorrow. 

——

I find that a lot of people have no idea what depression feels like. Oftentimes, it’s a joke. “Why don’t they just get over it?” “Why don’t you just be thankful for some things?” “Clean your room; open some blinds!” “Just call a friend.”

But I just couldn’t. No one with serious depression can. In all honesty, to have depression and not kill yourself sometime during the day is a huge feat. And it’s not pretend. It’s devastatingly real. So real that I would rather go through every day of chemotherapy and amputation instead.

People who stay alive in this aren’t a mess – they’re stronger than you’ll ever know.

So here’s to hope. If you don’t understand depression, please do. Know if your friends and family are depressed. If they’re not calling you back, it might because they need you to go to their house and help them. Clean their house until they can do it again on their own. Never tell them they’re a mess – they’ve already got all the problems evident enough.

If you do understand depression, and you’ve been there, you’re not alone. You are never, ever alone. I know how you feel, and I now, for the first time in my entire life, am not fighting the negative screaming in my head. I’m alive, and you will be too.

Just comment here if you need help. I can help you know what to do.

Don’t give up. You are not ever alone.

…because love wins.

Image

Dreams do come true.

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ImageShe steps out into the light. The backstage had been a flurry of hundreds of people milling around. 

“Decker, check. Check. Check.” 

In 2 hours, thousands of people will enter this auditorium. They’ll come from all around the country. They’ll be in the middle of a fight with their wife. They’ll wish their children could do better in school. They’ll have an autistic sister. They’ll be sad. They’ll be hopeless. They’ll be happy. They’ll understand life, or they won’t. 

She stops out there. Says a prayer.

“Abba, it’s not me. It’s You. You have them. You be with them. You dream loud, speak loud, do what you do. I’m just so human.” 

She looks down at her leg. Who would have thought that this piece of molded plastic would lead to a headset, singing on stage, jumping up and down, crying in front of people? Well, surely not she. She was just this little girl with doggies on her footy pajamas sitting on the porch talking to her Father. 

And a tear falls. One tear, as she looks down at her mom, dad, and sister. Front row, always catching a tear, a hug, a smile, a reminder of who she is. 

Who is she that she could speak through an amputation and chemo drip? 

She’s just a human. Who has lost much. And who has everything, because of Jesus. 

She’s a girl who watches His dreams for her come true every day. 

…because love wins.

Heartbreak.

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New ThingsSometimes it seems like everything hard is happening all at the same time. Do you get that? Do you know what that feels like? When you lose someone?

When you lose yourself?

This has been one of those years. Not just a day, or a week. It’s been a brutal year. Loss of people, loss of places, loss of security, loss of knowing. I’ve been way way way down. I’ve cried more than I’ve ever cried. And I’ve learned again the beauty of coming up. I’ve laughed more than I’ve ever laughed.

I feel alive. More than ever.

Last night a friend of mine called me after having a hard week himself. He doesn’t really know it, but his own bright spirit in the midst of a breaking down is enough to remind me that I have climbed up the hill. That I have more muscle, and that while I’m not to the top of the mountain yet, that this climb is beautiful.

Heartache is a mountain.

And your heart is a muscle. I say that a lot, after hearing it performed live in a song with a friend who has also been through great loss, and I learned that it’s true.

Heartbreak isn’t real. Our hearts our muscles, growing stronger as we climb. They don’t ever just…break.

Today marks 15 years since the day I was told I had stage 4 bone cancer. I remember the day like it was this morning. My heart races when I think of it, and I remember how afraid I was. I thought my heart couldn’t possibly beat again.

But here I am, 15 years later, even after a rough year, standing, looking up at the mountain, and smiling as I take one more step.

Just let the light come in. I promise you deeply, friend…this is not the end.

…because love wins.

Your Heart is a Muscle.

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“It’s times like this you must be calm. You gotta work it out, make it stronger, try for me, just a little longer. You say love’s a fragile thing, made of glass, but I think your heart is a muscle.”

Our hearts do not just break. They hurt when they stretch, but they get stronger after that. Don’t you give up. You will not break.

Your heart is a muscle.

…because love wins.

How to be happy.

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1.      Enjoy simplicity.

2.      Smile as much as possible.

3.      Live for today.

4.      Love each other.

5.      Watch the sunset.

6.      Read hundreds of books.

7.      Listen to great music.

8.      Love yourself.

9.      Learn from your mistakes.

10.  Understand that no one is perfect.

11.  Eat ice cream in summer.

12.  Build a snow fort.

13.  Act like a kid again.

14.  Take nothing for gratnted.

15.  Live up to your expectations.

…because love wins.

Meet Kaden Tjossem.

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This is Kaden.

You may remember him from a previous blog post. He’s a very old 5 years old this year. I met him a little over a year ago, when he was diagnosed with Osteosarcoma, the same cancer I had 14 years ago. The cancer is a rare form of bone cancer and resulted in us both having Rotationplasty.

He allows me the time to be a part of his life and laughs with me while we play. He fights strong, he’s kind, sweet, and loves his parents. He is a pro video gamer, and has learned to walk as well as me at the age of five. He’s the hero of many, and he is the version of honest that makes the world’s hearts smile.

This Thanksgiving, Kaden is still battling his cancer hard. After it came back, he told me that it was, and that he didn’t want to have to be in the hospital. He wanted to play with his puppy and be a 5 year old. I want that for him too.

You can join in prayer and encouragement of Kaden’s journey by following their new page on facebook: Prayers and Love for Kaden. Kids should not have cancer, and while we work on fixing that, let’s also work on making sure these families facing this atrocity never do it alone.

This holiday season, give your joy and prayers, away.

…because love wins.

*Kaden and I met through an organization near and dear to my heart, Brighter Tomorrows. Feel free to find out more about non-profit here.