Temporarily derailed.

I walked through my kitchen this week and the sight I beheld across the room into my family room caused me to stop dead in my tracks. My body’s physical reaction is difficult to put into words. It was mixture of nauseous and weakness along with a heightend sense of adrenaline.

Cue the emotional and dreadful music.

Hold your breath.

Wait for it.

Thomas and Friends was on my tv. My 6th grade son was laying on the couch covered in a blanket and staring at the screen.

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Granted, this may not sound like your typical horror scene. I don’t think the little blue train with the happy talking face has been a villain in many settings. He and his colorful train friends are actually quite cute and sweet.

But it’s not them, it’s me. I associate those talking trains with something else. Something painful. Something sad.

The same lanky preteen boy who now lays on the couch fighting pneumonia was once a toddler diagnosed with leukemia. We spent over three years watching this boy get chemo treatments and we lived in isolation. Our most frequent companions were the colorful trains from Thomas and Friends. James, Percy, Gordon, Thomas, Edward… I can still quote many of their friendly British lines.

But it has been over six years since our son finished chemo and he is now a happy and cancer-free middle schooler. He’s active in sports, does his homework, and rarely sits still.

That is until this week when he caught a nasty virus that decided to settle in his left lung and cause him to miss several days of school. It’s pneumonia, but it’s not cancer. It’s “one of those things” that he probably caught from the germ smorgasbord known as public school. It is unrelated to the cancer. It is going to be okay.

But as I walked through the kitchen and saw him sick on the couch not caring enough or possessing the energy to change the channel when Thomas and Friends came on PBS, I stopped and took notice.

Not this again. Please!

After I caught my breath, I took a picture on my smartphone and texted it to my husband. He understood its meaning without much explanation.

“This makes me sick too,” he replied. “But remember how far we have come and that this is not our norm anymore.”

Yes. Another quote I want to commit to memory.

This is not our norm anymore. Time has passed. Change has come.

Our son is healthy. Our God and brilliant doctors helped to heal him.

It took me a few minutes to calm my heart rate and sooth my nerves, but the moment and the perspective I gained have stayed with me.

Sometimes, remembering where you’ve been brings gratitude.

Sometimes, seeing how far you’ve come brings hope.

Sometimes a little blue talking train can remind you that healing does in fact come with the passing of time.

 


This post is part of the Five Minute Friday community where writers are encouraged to write on a topic for about 5 minutes based on a one-word prompt. This week’s word: HEAL

 

Our Reality (TV). 

  
We are not exactly “camera ready” people. We’re far from glamorous. Very far. We’re just a regular, plain, run-of-the-mill family. 

 But we’re willing. 

And it appears that’s almost as good. 

Willing to tell our story and then simply showing up when we’re called. We’ve tried to make that our practice. 

Recently we were asked to share about our son, Karson’s, battle with leukemia. How he is a survivor, and the amazing research being done that has helped make this our version of reality TV. 

The camera man and reporter met us outside on a 90 degree day. I started to melt from the heat and could feel sweat rolling down my back before we even began the interview. My husband, Kraig, had driven straight from an appointment with our eye doctor where he’d had his pupils dilated. After being asked to remove his sunglasses for the filming, Kraig squinted his way through the next hour and we laughed at his expense. I got emotional about the topic as I answered the reporter’s questions with honesty and openness. This all made for a less than perfect shoot. 

But that doesn’t really matter. 

What matters is that we were able to share our story.

That maybe another family out there who is currently in the trenches, watching their child fight a serious illness, will see a glimmer of hope. 

That maybe some more attention will be given to pediatric cancer research. 

That maybe someone will feel a little less alone in their struggle.

That maybe gratitude will trump the pain. 

That maybe this will be the boost someone else needs to share their own story. 

That maybe willingness and showing up is even better than perfection and glamour, after all. 

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Here’s the link to the news story: 

Survivor Guilt: Turning Guilt Into Hope

Today, February 9th, 2015, marks the 8th anniversary of our son Karson’s diagnosis with leukemia. Eight years. This date is always a mixed bag of emotions for us. We feel pure elation for where we are today, and yet the moments of shock and sorrow we felt 8 years ago are still very raw and tangible. We celebrate how far we’ve come, and we remember because it’s important to never forget where we’ve been. 

I wrote a blog article about the “survivor guilt” that I sometimes feel and how I’ve been challenged to turn that guilt into hope for others. The Riley Children’s Foundation was kind enough to share it on their blog today in honor of Karson’s diagnosis anniversary. You can find it on the RCF page here. Or, you can read it on my personal blog below. 

Here’s to hope! 

 

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I tilted my head back until I felt my neck muscles had reached their limit. I was getting the best view possible as I watched my son attempt to scale an almost 30 foot climbing wall at our local YMCA.

I know nothing about climbing, so I was not there to offer advice, but to cheer Karson on and to take pictures. So, when Karson stopped about three quarters of the way up and let go of his grip, with both his hands and his feet, I wasn’t sure what to do or say.

He hung there, suspended in the air, by the rope and harness that was being carefully anchored on the ground by a trained staff member. Karson’s body drifted slowly from side to side as he shook out his hands and repeatedly said, “I’m done. I can’t go any further. I’m too tired.”

I wasn’t sure how to respond. Should I let him quit? Had he pushed himself to his limit? I really didn’t know what to tell him because I’d never been in his position and I didn’t know how he really felt.

But, the trained climbing expert who was calmly holding onto Karson’s rope and steadying him in mid-air spoke up. “You can do it!” he said. “Don’t quit. Come on man, you have strong legs, you’re tall, you can do this. It’s not much further. “

At first Karson shook his head and looked at me for permission to give up. I deferred by looking at the climbing expert who was still yelling out words of encouragement.

After a few moments, Karson turned back toward the wall and grabbed on with his right hand, and then his left, and then he found places to anchor his feet.

The climbing expert started to shout out specific commands.

 “Right hand blue.”

“Left foot yellow. That’s it.”

“Now left hand green. You can reach it.”

And though it may have sounded like a game of Twister, this man was telling my son how to get to the top of the wall, one colored fake rock at a time.

And Karson did.

I liken this experience with Karson to another we’ve faced in his lifetime. Cancer.

His diagnosis with leukemia at the age of two was a wall that stood in front of us and stretched higher than we could even see.

The climb took years of maneuvering through chemotherapy treatments, steroids, hair loss, weight gain, isolation and spinal taps.

There were times in the midst of it all when we let go of the wall and swung helplessly in mid-air without an ounce of energy left to go forward.

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And it was during those times that I heard the voices of others who had already climbed this wall and who had successfully made it to the top. Families of other children who had fought leukemia and other cancers encouraged us by saying,

“You can do this. You are strong. Karson is strong. God is good. Keep climbing.”

Then, as we’d turn our faces toward the next trial their words would become even more specific.

 “We remember the loneliness of isolation. We’re here for you via phone of email whenever you need to talk.”

“Oh, that drug was the worst! Are you experiencing that side effect too? We can relate. Here’s an idea we found that brought some relief.”

“Our daughter had the same issue with the spinal taps. You’re not alone. We’re praying for you.”

Do you see what these survivors, these “experts” in the steep climb against cancer, were doing?

They were helping us get to the top, one excruciating moment at a time.

And we did.

Karson finished his three years of chemotherapy in 2010 and he remains cancer-free to this day. He’s a healthy, strong, ten-year-old who can now go the YMCA and climb a wall like any other 4th grader.

But the problem is, sometimes I feel guilty about our success.

It may sound crazy, but as the years have ticked by and Karson has continued to thrive, I sometimes feel the “survivors guilt” trickle in. It’s second-hand survivor’s guilt, really. But it stings just the same.

And at first, I wasn’t sure what to do about it.

The feelings of guilt caused me to be silent and not share about our success fearing I may cause pain to others who were struggling and who weren’t as fortunate.

But my silence was detrimental instead of helpful.

Lately I’ve been reminded of the gift that I can now offer to others who are facing a difficult climb.

The gift of hope.

I may never have climbed an actual climbing wall, but I have maneuvered through mothering a child with a life-threatening illness.

I’ve been there.

I know what it feels like.

I can help guide others toward the next goal and over the next hurdle.

And so instead of allowing my survivor’s guilt to render me speechless and idle, I’ve been reminded to shout to those who are on the wall in the midst of their battles.

I need to turn my guilt into hope for someone else.

It’s what others did for us, and their encouragement helped us finish the fight.

Now it’s my turn.

I won’t allow my survivors guilt to silence me. Instead, I will turn that guilt into the gift of hope for someone else.

And together, we can keep climbing.

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Thoughts on Cancer and Magic Johnson

I’m not a Magic Johnson fan, but that doesn’t really matter. I am, however, a huge fan of biographies. You can put a book or documentary about almost anyone in front of me and I’m hooked. I love to learn about people’s stories. Therefore, when a documentary about Magic Johnson was on our television one evening this summer I curled up in my chair with my popcorn and watched.

I’m not here to tell you about basketball or the Lakers or any of that. Sure, there were great games and amazing statistics but it was actually something Johnson said near the end of the show that struck me.

The basketball legend was sharing about his journey with HIV. He was diagnosed at a time when many thought it would be a swift death sentence for both his basketball career and his very life. They were wrong. Johnson has lived with AIDS for 23 years and due to medical treatments he continues to lead a fairly normal life.

Johnson has been the face of HIV for almost a quarter of a century but he said that’s been both good and bad.

The good has been the level of awareness and education that many have received due to such a public figure being diagnosed.

The bad is that he’s alive and well.

The bad may seem good, and it most definitely is, but he was saying that in the fight to raise awareness and fund for HIV/AIDS many look to him and think, “He’s fine! He’s healthy! He’s had AIDS forever and still looks good. What’s the big deal?”

It’s a double-edged sword.

I can relate (though I’m quite certain this is the only way I can relate to Magic Johnson!)

k1 half kickOur son, Karson, was diagnosed with leukemia when he was just two years old. It was a possible death sentence for him. We didn’t know how his little body would respond to the treatment or if the cancer would take his life. However, we are SO thankful that Karson is not only alive, he’s healthy and thriving. He’s now almost 10 years old and has been done with his rigorous 3 ½ years of chemo for more than 4 years. The dark valley of that time is behind us.

If you look at Karson you’d never know he’d once been a bald, puffy, weak and very sick little toddler. You’d never know he went through years of chemotherapy, 22 spinal taps, 2 bone marrow biopsies, 3 years of steroids, and more blood transfusions and hospital stays than we can count. Instead, you see a tall and smiling 4th grader who pitched on his Little League team and just broke his arm being “all boy” while doing a cannonball off a swing in our backyard.

And when you see him as a leukemia survivor you may begin to think, “He’s fine! He’s healthy! He went through leukemia but look at him now. What’s the big deal?”

But it is a big deal.

Karson is alive and healthy. Karson is a leukemia survivor.

Not every story ends this way. Not everyone is healthy like Magic Johnson and Karson Cabe years after being diagnosed with life-threatening illnesses. We don’t know why we are so blessed to have this outcome when others deal with death and sorrow, but we are grateful beyond words.

And while on this mountaintop we don’t want to waste what we learned in the valley.

And that’s why we continue to share his story and many statistics and facts. Like:

 

  • Cancer is the #1 disease-related causes of death for children.
  • Every day, 42 children are diagnosed with cancer.
  • 12% of children diagnosed with cancer do not survive.
  • Children’s cancer affects all ethnic, gender and socio-economic groups.
  • The average age of children diagnosed is six.
  • More than 40,000 children undergo treatment for cancer each year.
  • 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.
  • There are approximately 375,000 adult survivors of children’s cancer in the United States.

 

I can’t speak for Magic Johnson, nor do I wish to, but I hope that his success story and Karson’s will champion the cause for those who are sick with these awful diseases.

If nothing else, it sure makes for a great documentary.

 

 

 

Bear Cub on a Barbie Bike

Down the street my little bear cub rode on the pretty, pink and purple Barbie bike with it’s matching girly training wheels. It should have been ever so cute.

But it wasn’t.

The bear cub on the bike wasn’t my little, pigtailed, feminine three-year-old, but instead her tall-for-his-age seven-year-old brother. His knees came up above the handlebars with every turn of the pedals. The training wheels gradually bent upward as his body weight tipped from one side to the other. His red helmet clashed with the pink and purple paint. And frankly, he looked pretty ridiculous.

My bear cub on a Barbie bike.

I call him my bear cub because he’s my son and because I turned into a Mother Bear that afternoon. I guess if I’m being honest with myself, I’ve been a protective and fiercely loving Mother Bear for seven years.

That’s really the whole problem here.

You see, when our son was a toddler he was very ill and endured over three years of chemotherapy after a devastating leukemia diagnosis. During that time we hibernated. I was a Mother Bear with a sick little cub and I did all that I could to keep him safe and sound while he healed. Our hibernation did not include bike rides because they could lead to falls and scrapes and bruises, especially for a child who often had low platelets and was very fragile. And since he never asked to ride a bike, we simply didn’t put him on one.

Today he’s a healthy and strong young man who was the tallest child in his first grade class. He plays basketball and baseball and swims like a fish. He’s big for his age and you’d never know by looking at him that he fought cancer as a preschooler. He’s growing up right before our eyes.

But he still can’t ride a bike.

And one thing he learned in first grade was that his friends can.

Now he knows what he’s missing and he wants to learn… desperately enough that he was willing to ride his little sister’s girly bike.  We’d tried his own bigger and boyish bike over and over again to no avail. He just didn’t have the experience of riding a smaller bike to know what it felt like to balance without training wheels. My husband even tried putting training wheels on his bike, but bikes built for 82 pound kids just aren’t made for training wheels.

So there we were on a sunny Sunday afternoon going down the sidewalk in our neighborhood. My son on the bike and me walking behind with my eyebrows raised and jaw clenched… just waiting for the poor training wheels to finally burst off and the exhausted bike with it’s rider collapsing to the ground. But, that did not happen. In fact, he did very well. Granted he had to get off the bike every once in a while to kick the bent training wheels back down so they’d reach the ground, but otherwise it was smooth sailing.

Until he rode by a yard full of kids.

Now, thankfully my little bear cub kept pedaling on and was completely oblivious to the conversation that took place amongst his peers. But I wasn’t. I was walking far enough behind that by the time I got to the kids I could hear their laughter, see their pointing and understand their mocking comments about the big boy riding a small pink bike. And oh, did my Mother Bear instincts kick in! I kept on walking and kept my mouth shut, but I sure wanted to go give those little kids a grizzly piece of my mind!

I held on to my tongue that day, and other days my husband and I held on to the back of my son’s bike desperately trying to help him learn to balance.

But it’s hard to know when to let go.

I probably should have let go years ago and allowed my little cub to ride a bike, even though it was scary for his mother. I probably am not a good one to help him learn to ride his big bike now because I’m afraid to let go and watch him fall.

But I can’t hold on forever… it wouldn’t be healthy if I did.

In fact, I’ve had to let go more often. I’ve had to let go of his bike and I’ve had to let go, albeit ever so gradually, of my children. It’s good for them to learn to ride a bike, even when they fall and get hurt. It’s good for them to grow up and become more independent and confident, even when it hurts my heart.

It’s hard to know when to hold on and when to let go.

But it seems like letting go is necessary. I’m going to have to send my children off to scary places… like second grade… and heaven forbid, middle school and high school. It’s why I get choked up at the end of Toy Story 3 when Andy’s toys are all waving goodbye to him as he heads off to college. I’m just afraid I’m not going to handle my own kids growing up with the grace and poise of Buzz Lightyear.

But grow up they will. I really wouldn’t want it any other way. But it’s hard. And I know those who have children who they have watched graduate from High School, enter the work force, and walk down the aisle, laugh at me and think I ain’t seen nothing yet.

So please, don’t remind me. I must take this one day at a time. One letting go at a time.

I’ve stopped hibernating now and I’m doing better at allowing my little bear cubs to roam on their own and grow to be more independent and confident.

And Barbie bikes, high school graduations, or wedding days, I pray that this Mother Bear will enjoy both the holding on and the letting go as my bear cubs grow up before my Mother Bear eyes.