Tag Archives: Childhood

Don’t ever let go.

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There are things in this life that were never meant to be gone. Sunsets. Ice cream cones. Funny pictures. Green grass. Lemonade. Sprinklers. Softball games. People. And apparently the show Survivor, but we won’t go there right now.

As I sit in my room in what still feels like a new city to me, I remember things to which I am not willing to say goodbye. They replay like I think they should on nights like this. Not sad, just…not here. Giggles in the solarium. Bike gangs. Sunsets on Garvin. Prayer. Deep, real, feeling. Sore hearts and many amateur photographers becoming famous. Laughing about how we have no idea what’s going on. (Like we do now…but we’re just not laughing in the same room.) The sunrise. Breathe. Maid of Honor wedding time. Walking into a house and knowing everyone…all over the city. Tears and laughter. And moments of divorce with parents and the way we were all together all the time.

It’s not that I can’t let go or move on or love what I have here, but it’s that I do not believe we were meant to say goodbye to things which once gave us such joy. Stay together. Make phone calls. Cry if you have to. Go to your new jobs and be “adults”. Laugh with new people and cry with new people and talk about the old ones forever.

But just don’t ever let go.

…because love wins.

Waiting.

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Fifteen years ago today I was in a cold hospital, waiting to start 49 weeks of chemotherapy. If there was one thing that I got good at while sitting in the hospital, clinic, or that year, was waiting. Not that we ever get good at waiting, I suppose, but I did get more accepting of the reality that time moves as it does.

When I have been healthy in my life, time has flown. As soon as it gets hard, I have the flu, or I have a cancer check-up, I wait again. And it’s hard.

But I’ve learned, that the waiting can be a wonderful time to know myself, and to know Jesus. That while I want something I deem good to come, it is already here. If I’m waiting, I’m already running the race for Jesus.

And I’ve learned that chances are, the waiting is time for me to rest. So just like I rested before a battle for my life, I’ve learned to always wait, serve, and live.

I’ve learned we’re never really waiting – what we want, we already have.

His name is Jesus.

https://www.youtube.com/watch?v=ozjzeQ9oiSM

…because love wins.

You are a beautiful thing.

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This is one of my favorite songs, forever, and for always. You are a beautiful thing. Because God made you that way. Accept it, and let it be beautiful.

…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.

I am thankful for backwards legs.

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http://www.youtube.com/watch?v=njJUcTbR2SY

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.

Live life like Make-A-Wish.

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Some of my good friends are going on their Make-A-Wish trip today. They texted me from their airplane and I could almost hug the joy through the 136 characters on that screen. I wanted to jump up and down for them and scream for happiness and throw rainbows in the air and dance a little too. That’s how exciting this is. And not just because they’re going here:

That’s a Disney Cruise, in case you didn’t know.

Do let me explain.

For those of you who have never heard of Make-A-Wish, it is an organization that grants wishes to children with life threatening or critical illnesses. When the medical world is able to give physical help, Make-A-Wish gives a one time, unforgettable object or event and a major set of smiles. Some children meet Justin Bieber. Some children have their rooms re-designed. And a large majority go to Disney World. Whatever the wish is, it is the choice of the ill child, and it will surely be unlike any experience they have ever had before. They will be treated like royalty, and appropriately given one thing that was seemingly impossible before.

This isn’t the exact one, but you get the idea.

13 years ago in September, I remember my excitement sitting on the airplane for my Make-A-Wish Trip. I had never flown before, just as my wish-kid friend mentioned above has not (Well, now he has, seeing that they should be well landed at this point.) and I remember nearly exploding with excitement about the experience that laid ahead of me. Most importantly though, I remember being so thankful to have my family with me away from a hospital. For just one week, I had everything I had wanted – just to be together.

The thing about cancer or any chronic illness is that it takes a lot from a family. Most specifically – it takes time – in so many ways. I know it seems like those are just cliche words on the screen to you, but I mean that with the depth of my aching heart.

For that reason, these days, I tend to live everything as though it were my greatest wish. Because in reality, every day is. I love airplanes and vacation, but also, anywhere I can be healthy and with my family is a continuation of my Make-A-Wish trip. As my friends will surely tell you, there is no other way to live, and no reason not to.

Simply put, living is a matter of appreciation. Join us! 🙂

…because love wins

*Shanna Decker is a an old soul. Spending nearly two decades personally mentoring families with childhood cancer, she has learned how to turn the most tragic of situations into pure triumph. She is a professional speaker, non-profit co-founder and coordinator, and would love to come present for your event! Learn more about her and contact her on her website.

An ode to my 5 year old battle partner.

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I walked down the halls of the children’s hospital carrying a small prosthetic leg just 17 years smaller than mine. Its owner and I have almost everything in common.

We know how to be out of control.
We know pain.
We know joy.
We know what it means to understand how terrible cancer is.
We know why kindness matters.
We know why our stuffed animals are so important.
We know why we tell our moms we love them.

We fight in the same army.

The owner of this leg rode in his wheelchair right next to me. Standing no higher than my hip, he is my battle partner on this open field of colored tiles and IV poles. In a war in which we fight with the best armies the world can offer. Those who arm us with research, chemotherapy, prayer, hope, strength, and willpower to move forward.

In a war in which we fight alongside each other against that cancer within us.

Our battle cry is this, childhood cancer:

Take our legs – we can do it.
Take our hair – we can do it.
Take our sleep – we can do it.
Take our dreams – we can do it.

You can take our everything.

Except our hope.

We will not, ever, at any moment, give up our hope. We guard it within one another, and it simply cannot be reached. Its protection is invincible as we walk hand-in-hand or wheelchair in wheelchair carrying each other’s dreams and wants and favorite video games.

For you fight for my life and I fight for yours, battle partner. You make me smile though tears and I tell you it won’t hurt forever. And there is no force stronger than two deep hearts saying no to that cancer.

But to my battle partner, if there comes a time when we must let go of our hands held so tightly, we will still never be apart. For when in war it doesn’t matter where you are; you are never left behind – and always held in the heart.

…because love wins.