What Not to Say When There is Nothing to Say

April 1, 2015.Reading time 5 minutes.

Recently, I was asked for advice about how to respond to the parents of a child diagnosed with cancer. Let me say from the outset that I am a dubious source whose council typically causes some manner of regret. However, since I have stood on the receiving end of some pretty stupid comments over the past year, I do have a fair amount of expertise in this particular area.

First, THERE ARE NO MAGIC WORDS, so don’t try to find them. When one is at the start of a long, twisted road that includes the potential mortality of their child, words simply cannot soothe. They can, however, aggravate. So I thought it might be helpful to look at some things that struck us the wrong way when we were facing our crisis.

1. Do not equate anything you’ve gone through (or had a third cousin go through) with their situation. This is an immediate conversation ender. We once had someone compare a month-long sinus infection to Kylie’s cancer.

2. One of the most frequent things we heard was, “What can I do?” No matter how sincere the offer, this can add stress to an already stressful situation. The parent of a recently diagnosed child has no idea what day it is or if they remembered to change their underwear for the past two weeks, so they will most likely have trouble assigning tasks to the three dozen people who have asked. Vague offers of help only muddle already murky waters.

3. By far the worst statement I got was, “I know how you feel.” Uh, no you don’t. Get back to me when you watch the rise and fall of your child’s chest wondering if it will stop during the night. And even if you have been there, your feelings and mine are totally different things.

4. Watch your quantity of words. Parents in this situation have a maximum amount they can absorb before they shut down. Docs usually fill that bucket daily.

5. Persistence can be irritating. There were weeks that passed when we just couldn’t answer texts and emails. It didn’t mean anything other than we were focused on greater issues. A second or third text reminding us of the original only made us feel bad for our inability to balance everything.

6. Don’t expect to assume a role that you didn’t have before diagnosis. If we haven’t spoken in years, I likely have someone else to bare my soul to. It is fine to offer especially if you have dealt with similar issues, but don’t expect it.

7. Don’t badger for information. We would have loved to have known specifics, time frames, and end dates. Unfortunately, these often don’t exist in the cancer game and constant demands for information only serve to remind a parent of their helplessness.

8. If you made an offer that wasn’t accepted, please understand it may be wanted or needed and simply came at the wrong time. Don’t be offended or press for an answer. If the parent needs it, they will most likely return to it eventually.

9. “No” is a perfectly valid answer that people must be prepared to accept without justification or hurt feelings. The parents do not need added drama in their life and shouldn’t be forced to manage the emotions of others.

10. With all of the fears and doubts of such a diagnosis swirling in the parent’s mind, a mention of God’s Will can be a very slippery slope. While we are believers, religious platitudes were not extremely helpful and I can only imagine how such words would be perceived by someone who isn’t a believer.

* * * * *

This list is not exhaustive and I can only speak for my family. I think you will find it interesting that while we experienced all of the above, not a single cancer family ever did any of them. Never.

I would guess that this list could apply for other health or traumatic situations, but I can’t speak to those since I have only navigated the pediatric cancer waters. (Look at me, trying to follow my own advice!)

Next week I will give some suggestions of things to say when there is nothing to say.

Why I Turned Right

March 25, 2015.Reading time 5 minutes.

This was not the ideal day to run a marathon, nor was I in shape to run one. A constant rain fell on us from the time we started, leaving me the choice to pull a race-day decision of shortening the run by half. No one would blame me.

*****

When I had signed up, we thought Kylie’s treatment was going well. Running the marathon to raise money for pediatric cancer research seemed to be a great thing to do for other children who would follow us. Her decline came so quickly. One of the most minor consequences of her passing was that I no longer cared about training. When the date came close, although not ready I decided to run – well, walk and run. I knew it would be a long day. Of my two running-mates, only Krish was prepared. Randy’s knee had prevented his training.

*****

We talked beforehand and I espoused my belief that there would be no shame in turning left at mile six and completing the half-marathon. No shame at all. It seemed the logical choice.

We lost Krish in the crowd early on and we wounded two ambled toward the split not knowing what the rest of the day would hold. After running four miles, my back began to ache. It wasn’t debilitating, but we still had twenty-two miles of pavement to pound… or possibly a wiser nine.

When we got close to the split, I wanted to go left. Already hurting and unprepared, the thought of the full scared me. Decision time had come.

“What do you want to do?” I asked.

“I kinda want to finish the drill,” Randy replied. “Just think of the accomplishment!”

I didn’t want to do it. I thought he was probably crazy enough to finish it alone. My back cried out that it was a bad choice. I hurt. I ached and I was about to move left and send him on his way when I thought of Kylie.

So many times during chemo, Kylie hurt. So many times, she ached and cried out that it was too hard – she couldn’t do it. She wanted to stop every day, but she kept on going. She persevered even though she didn’t know when it would stop. When she was throwing up from chemo, she couldn’t count down from twenty-six to one knowing the nausea would subside with the numbers. It just went on and on for her. I knew the exact end. There was a palpable finish line waiting for me. The end of the misery called “treatment” for cancer never came for her. She died before her treatments ended.

The thought of her triggered emotions for me, mixing tears with the rain on my face. I knew there was only one choice. I turned right. I turned right for Kylie. How could I not finish this race when she pushed so bravely through hers?

We trudged on for twenty more miles. It wasn’t pretty. The rain never stopped and the pain persisted to the end. We walked a good bit, but ran at the finish as if we’d been running the entire time. It was finally over.

I bent to receive a medal that I wish I could put around her neck, but I can’t. I can’t because we don’t have safe and adequate treatment for childhood cancer, which is the very reason I ran in the first place. The medal will always be hers, though. And someday, I’ll tell her about it and how I thought of her and turned right.