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!
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.
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.