Monday, April 18, 2016

When There is Nothing to Say: Part 1

The following blogpost contains a direct excerpt from Mark Myers. Mark is the dad of Kylie, a Ewing's Angel who passed away February 13th, 2015. This past week, I had the incredible privilege of acquiring Mark's recently released book- Missing Kylie. 

Before reading this post, I would strongly suggest that the members of Caleb's Crew head to Amazon and purchase his book. (Click here) Here are my reasons for doing so. 
First of all, his writing's directly reflect so many of the thoughts, emotions, and situations that anyone with cancer endures. (Perfect way to familiarize yourself with the journey of cancer) 
Secondly, all of the profits will be invested into Childhood Cancer Research. (Perfect way to invest your money for a great cause!) 
Lastly, to remember his daughter, Kylie. Childhood Cancer is a big deal.
 It claims over 15,000 kids lives a year. Cancer is the number one cause of death by disease in children. It's time to for this to change. It's time to make a difference.
 (Perfect way to invest your life in others!)

Also, this post will be one of a three-part series that Mark has written. Out of the entire book, I think this section on "When there is Nothing to Say" will have the most application to the majority of my readers. In the next three days, the plan is to post each part of the series. If you have anyone you know that could benefit from this- please share both these posts and most importantly the book!

Part 1: What Not to Say When There is Nothing to Say

"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, Ido 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, aggregate. 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 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 feeling sand 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 haven't navigated the pediatric cancer waters. (Look at me, trying to follow my own advice!)"

More blogposts and information about Mark Myers can be found at here. ( 

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