To Tell or Not to Tell

  

When I was first diagnosed with amyloidosis, my son Jason was only four years-old.  In fact, the day I got the news I had to rush from the doctor's office to go pick him up from preschool.  I knew I would need to be treated with high-dose chemotherapy and a bone marrow transplant, which of course would result in obvious changes in my physical appearance and abilities.  But I struggled with how I would break the news to Jason that I would need to leave home for 4-8 weeks and live near Boston Medical Center.  I wasn't sure whether I wanted to tell him the truth about what was going on, since he was so young.  I didn't want to scare him or cause him to be overly worried about me.  But I also didn't want to make up a story and "lie" to him about where I was going or what was happening--what if he found out later that I had been dishonest?  Would he lose trust in me?  Ultimately, I decided on a middle ground:  I made up a story to tell him the truth.  The first parenting principle that popped in my head was "It's not what you say; it's how you say it."  When Jason took his first few falls, as long as I knew he wasn't seriously hurt, I would smile and exclaim, "Uh-oh!" in a silly way.  This kept Jason from feeling panicked and helped him realize that he'd had just a minor bump.  A second expression came to me as well:  "Kids do what you do, not what you say."  How many of us have screamed to our children, "Stop screaming!"  Or how about urging them to make healthy snack choices when in fact they see us stuffing down leftover chicken nuggets over the sink?  I knew I had to tell Jason the facts in a simple way that he could understand, but if I showed him that I was not frightened and only expected the best possible outcome, then he would feel the same.  When I finally sat down with him, I engaged his interest with some silly sketches to illustrate what was happening to me (remember that page in the book, folks??).  At four years-old, he was able to understood the basics of what was making me sick, and how the doctor would make me better.  We got through the 2-year experience with minimal fear and worry, and now at eight years old, I am always amazed at the empathy and kindness Jason exhibits whenever he encounters ill or disabled people. 

  

For more about the strategies I used to explain my illness, treatment and recovery to Jason, please come to the talk I'm giving at the JCC Acton on Tuesday, April 26 at 7:30 pm.