Top 10 things never to say to a parent of a terminally ill child.

Most successful blog posts seem to start with a top 5 or top 10 list…. Five ways to sell your home sooner, Ten best dating tips, Five must have fashion items, etc, etc

Well here is mine… ten things never to say to a parent of a terminally ill child…

  1. God never gives anyone more than they can handleummm have you seen me lately??? Clearly, I’m not handling this!
  2. Everything happens for a reasonthis may well be true but right now that doesn’t help me sleep at night or make hospital stays any more fun.
  3. I don’t know how you do itany parent of a sick, special needs child or really every other exhausted parent will tell you they just do it because they love their child and basically, no one else will.
  4. Miracles happenyes they do but not all the time and not to everyone. Chances are there won’t be a miraculous cure.
  5. But look how happy he iswhat? Happy people can’t die?
  6. Any one of us could die tomorrowagain very true but you aren’t spending your life attached to a machine and in and out of hospital. It’s highly unlikely you will die tomorrow.
  7. Surely there must be a cure…. If there was, don’t you think we would have used it. Modern science can only come so far.
  8. No matter what happens, it’s God’s willthis is your belief not mine and it doesn’t make me feel happier about the situation.
  9. At least you’ve had him this longhe has surpassed the initial prognosis but really? It would still be a tragedy if he died at age 50. This is really unhelpful.
  10. Maybe it’s just better if he died nowbetter for whom? Him? Me? You? He’s not suffering and right now if he wants to keep living then I’m going to move heaven and hell to make that happen.

There are generally two reasons why these lines are regularly thrown into conversations – because the person doesn’t know what else to say or because they genuinely believe these statements to be true. It’s mostly strangers and I know their heart is in the right place. I get it, I too have been in these awkward situations when I don’t know what to say but these statements are neither helpful nor comforting so please just don’t

What are the most annoying statements you’ve heard?


7 thoughts on “Top 10 things never to say to a parent of a terminally ill child.

  1. I’ve heard most if not all of the above.
    Now I think the one I dislike the most is when people tell me she’s in a better place or I will see her again. As a non-believer, I don’t really believe that.
    And I believe I have vented about 2 and 8 to our family.

  2. I have thought a lot about #2 and #8, and how those statements do (or do not) align with my personal religious beliefs. I do not believe in a God that surveys the world of events and gives his overt permission for things to happen (e.g. it’s God’s will). Instead, I believe in a God that created this earth and placed us here to exercise our free will. A central part in His plan for us is that he does not interfere with our freedom to choose. If a person decides to drink, then he drives and kills someone else, God will not interfere with the natural consequences. Was it God’s will that this person die? I don’t believe so; but it is his will that he let our choices play out naturally. How does this relate to our children who are terminally ill? Hmmm. I’ve given this a lot of thought. I don’t think God hand picks our situations and life events; but that we are all presented with life experiences that are a result of 1) others’ choices and 2) chance. My wife and I have 7 children. Emily had 6 siblings as a result of our choices; but she had mitochondrial disease due to chance. Could God intervene? I’m sure He could, I suppose; but He didn’t. I don’t really look at it as being God’s will, but rather as it being “just the way it is.” I don’t feel anger or pity for our situation. Sadness, yes; but that sadness has never been attached to a “why me?”

    My belief in God has helped me through Emily’s death not because I believe her death was His will, but because I believe that He knows me, that He knows Emily, that He loves us, and that His love is made manifest in our lives in countless ways. I also believe that this mortal life is an infinitesimal part of an eternal existence and that I will see Emily again. I don’t think she is “waiting” for us to finish here; I think there is a “wrinkle in time”. When it comes time for me to die, Emily will not have experienced any “waiting” before our reunion. To her, she will awake from her death to see her parents. This belief is not official doctrine of my religion; it’s just what I think. Furthermore, I’m not sure I believe in this “wrinkle of time” for adults. I just can’t imagine a baby having to wait for her parents. This belief isn’t set in stone, it’s more of a working theory.

    Wow, I rambled.

    One more thing. Most people are well meaning. Death is a scary topic, and taboo in many ways. Perhaps if one didn’t listen to the words of the silly statements, but instead chose to hear the underlying message, which usually is something like: “I care about you and I feel bad about this and I want to say or do something to help you in some way.” It would be a lot easier if people just said that, wouldn’t it?!

    Thanks for sharing, Kylie. This is very helpful to me.

    • Thanks Aaron, as always your comments are beautifully worded. I know that religion has been helpful in your journey and I love your comment that it is a working theory. Like you, I think as life plays out with Aidan my attitudes and beliefs change and perhaps when he is gone they will change some more. There are just so many unanswered questions. Why me? Why him?

      Thanks for contributing to the blog, it means a lot.

  3. Hi Kylie,
    I love the top ten list, so true. It’s ironically funny how people’s attempts at being helpful, turn out to be more hurtful than anything

  4. Pingback: Maintaining friendships when your child is dying takes work | Parenting in Limbo

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