Listening Lessons: Unexpected


This summer has been an absolutely beautiful, unexpected, adventure. I have seen the best, and some of the worst in people. But mostly, the best. In the most, humbling, amazing ways – unexpected.

Unexpected.

It’s amazing how we can crawl into a hole, work and work, and work, and think we’re doing everything we should be, only to all of a sudden have the hole fill up with a rainstorm, and us get floated out of the hole. Then, outside, we are scared, confused, and need to learn how to find something else. To see the everything else.

It’s there that we realize that there’s a whole horizon that we’ve never seen. Paths to walk and paths to blaze. And out there, you will meet the greatest people – people you never knew could be the greatest gifts you’d ever have.

Unexpected. I’m learning to expect more good. Thankful for summertime lessons.

I asked Ray what made him what he enjoyed the most about our new non-profit adventure. Without a thought he turned around, smiled, and said, “That you’re happy.”

Oh, and if you haven’t heard, the latest and greatest is here: http://www.childhoodcancercommunity.org.

…because love wins.

 

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


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.

That’s actually pretend.


Real Love

I was going to say that I don’t mean to break this to you, but I really do mean to break it to you. If you haven’t heard this before, or don’t seem to understand what I’m about to tell you, be sure to read it over and over and over again until you do.

Most of the things around you are actually pretend.

“What? You’re crazy.”

No, really.

“Um.”

Really. Let’s observe. What decides what you do? How you do it? WHY you do whatever it is that you do? I’m willing to bet it’s for three main reasons:

1) Because someone told you to.
2) Because you’re afraid someone will think less of you because you don’t.
3) Because it’s what everyone else does.

Even if this isn’t it for you (which I am certain for most of the world, it is.), there is a serious joke being played on us.

How can we have a culture that is anything, if all we exist to do is please one another? Half of what you think in your head, either you made up, or the person next to you made up. The lies, the garbage, the “fulfilling” alcohol that you continue to drink. It’s all a sick illusion – a pretend form of real life.

Real is defined as such: Actually existing as a thing or occuring in fact; not imagined or supposed.

I am willing to say that most of your decisions in life about the kind of person that you are, are based totally on pretend premises. That you do them and if you ask yourself why you do them, it’s not because you, at the core of you, know that it’s the right thing to do.

Instead, it’s because of some other fluffy pretend stuff.

Here’s your job for the day.

1) If you haven’t sat in silence for ONE FULL HOUR of your life with no interruptions, do so. Get to know yourself. And Jesus. Those things are in the quiet places.
2) Pick two things you do because someone else told you to that you know aren’t what you should be doing. And then stop doing them.
3) Write down how you see yourself. Then, reverse all the things that say you’re worth nothing. Write down that you’re worth everything as many times as it takes to believe it.
4) If you hate your job, just quit. Stop wasting your life.
5) Go hug your mom, dad, siblings, friends, and maybe even the homeless man on 55th street.
6) Eat fruit.

7) Stop pretending. Stop letting others pretend. Let life be real and quit being afraid of the beauty that could come to you if you just let life be real.

…because love wins.

 

In the Hall of Fame.


ImageOften in life, as a leader of many who is also a young adult, I’ve had a lot of lash back. Not that people didn’t like what I was doing, or didn’t want to walk alongside me, but that people often times didn’t (and don’t) believe what I am saying or that why I am acting is genuine.

But the reality is, even in this broken world, some people are still honest. And some people really do still care about you. And they don’t do things half way. They are loyal. They will come in the middle of the night – probably with your favorite tray of cookies.

And they aren’t here to push you under or away.

In the midst of bombings in Boston and explosions in Texas and entire countries unaware of the outside world because of tyrants, be a sparkle. Be a light. Don’t let people who aren’t genuine make you think that you can’t be either.

It’s that kind of thing that gets you in the hall of fame.

…because love wins.

Your Heart is a Muscle.


“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.


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.


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.

I am thankful for backwards legs.


If you have not seen the Mayo Clinic educational video done about Rotationplasty which takes over the internet for all things Rotationplasty, please see it above.

When I had cancer, I didn’t have a video (nor very many people) to help me decide if Rotationplasty was good for me. But, when I started to re-learn sports and mentor other children with the procedure, I knew this had to change. So we made video after video. At Mayo Clinic, each patient facing this operation meets me, and is given a copy of this to watch on repeat. I get to be what I never had, for others.

Today, I often find messages from people all around the world in my inbox saying things like:

“It was your videos with the Mayo Clinic that convinced us rotationplasty was the way to go. Up until then we were (in our minds) sure that limb salvage was best, but after meeting patients who have had both and seeing your video, we knew in our hearts rotationplasty would allow our son a productive and active life. Thank you.”

Today, I am thankful for being alive. Thankful for Rotationplasty, and incredibly thankful to have the opportunity to walk others along the path I walk.

Appreciate your challenges today.

…because love wins.