The things some people will say are amazing. The reasons for inappropriate comments are vast, some of which include ignorance, uneasiness or just a complete lack of forethought. While we all make mistakes and sometimes regret something we have said -- maybe we asked an overweight woman when she was expecting, or gave an unsolicited comment about liking someone's old hair color better -- there are some instances where if we are not sure what to say, sometimes it's better to say nothing at all. Making insensitive comments to a child with cancer and/or to their mother, clearly falls into the category of "one of those instances."
I remember when my five-year-old daughter, Skyler, was first diagnosed with ALL (Acute Lymphoblastic Leukemia), people approached me with all sorts of advice. Most of it is a blur, but I distinctly remember my friend, who had recently battled breast cancer herself, saying, "don't expect people to say the right thing." I didn't completely understand what she meant at the time because it was hard to imagine anyone saying something completely offensive to someone whose very young child had just been diagnosed with a life-threatening disease. However, I have since learned.
Let's first start with one of my daughter's primary doctors. Being a pediatric oncologist and dealing with children all day, one would imagine you would develop a sort of "kid tact." Children with cancer are enduring a unique sense of hell each and every day. They're being picked at, poked, prodded, infused with poison, taking medicine that tastes worse that anything most of us can imagine, losing their hair, their social life, their energy, their appetite... the list is endless. So, it's not surprising that such a child would not be into "chatting" with the doctor who, in the mind of a five-year-old, contributes to her misery. Skyler predictably clammed up each time the doctor entered. After a while, she got brave and decided to come out of her shell, actually answering a question the doctor asked. Instead of reacting positively, as a reward and acknowledgement for speaking, the doctor responded with, "Oh, it speaks." Naturally, Skyler stopped talking immediately.
Another memorable example would be when Skyler started losing her hair. Contrary to what one may imagine, it doesn't just neatly fall out. It came out very unevenly. She had numerous bald patches and the hair that was left became so matted that it basically turned to dreadlocks. She didn't want to cut it because "it was hers." So, we let her keep it. Instead of understanding, each week when we went to the clinic, the doctor would make some sort of remark like, "Oh my God, look at that hair," and other similar statements that would make anyone feel insecure. Here we were trying our best to build up her self-esteem and let her know she was beautiful no matter what, and then the doctor walks in and tears her down. Skyler immediately reached for her hat. Heartbreaking. And what an avoidable setback.
Now I'll give a few examples of peoples' lack of tact to me, the mother. One person I had e-mailed with the unfortunate news responded with "this will be either a long term or, worst case scenario, short term worry." Short term meaning my daughter wouldn't win her fight against cancer. Really? Who would say that to someone? he then went on to tell me about a friend's child who had overcome the disease but that "the good times didn't last long because the parents ended up getting divorced, which happens a lot when a child is ill." Huh?? Instead of feeling a sense of support or uplifted in any way, I came away from her e-mail feeling terrible.
Another person wrote me with, "I don't have children so I can't imagine what it's like to have a child facing death." What? In my mind, my child is not facing death because she's going to beat this. And even if that were the case, who the hell says this to a mother?" Wouldn't something to the effect of, "Stay strong, she will overcome this," or something similar be more appropriate? Again, I came away with a feeling of impending doom.
I know none of these statements were made with ill will, but just a severe lack of tact. I also understand that many people don't know the "right" way to respond because topics such as this make many feel uncomfortable. I get that. However, most people would have enough sense to never make such inappropriate comments. I don't expect people to say the exact right thing because there is no exact right thing to say. But, if you are someone who normally has an issue with saying the wrong thing or not having an appropriate "filter," please take a moment to consider your words a bit more carefully before impulsively uttering them to a mother or child fighting for their life.
Thank you.