Monday, December 9, 2013

Things not to say to the parent of a chronically ill child

You know how they say that with parenting you don't get an instruction manual?  You know that feeling when you don't know if you are doing the right thing and you just have to pray yourself through it and trust your gut and hope that you make the right decisions for your child?  Well ~ you can take those feelings and increase them about 1,000 fold when you are parenting a child with chronic illness(es) and lifelong conditions. 
I know that there are no parenting instruction books - but at least from one parent to the next you can compare notes and ask, "What did you do in this situation?"  But some of us...don't get to do that.  Some of us are in unique situations and believe me, parenting looks different from over here.  There isn't  always someone to compare notes with.  There isn't always anyone else who has been where you are.  It's a challenge.
Sometimes parents of healthy children don't know what to say to you.  You can tell they feel like they should say something but they don't know what and they feel awkward.  And sometimes ~ when we are in that position we are apt to say the wrong thing.  It's not that they are a bad person or don't care.  They just don't know what to say or how to ask how things are going and as human beings ~ we are very likely to say just the *wrong* things in those moments.  I've done it.  I don't know anyone who hasn't done it in some circumstance or another. 
So let me just share a few of things with you that might help you (and the other parent) through that moment should it ever arise for you.
First of all, if you don't *really* want to know how the child is doing as far as their health ~ you truly do not *have* to ask.  It's not expected and you can hold a perfectly nice conversation without ever mentioning it.  Parents of sick children don't put the expectation on you that you have to check up on their child's health status every time you talk to us.  Because see ~ there's this thing that happens when you ask how things are going regarding the child and their situation - but you're only asking to be nice and in reality, you don't really want to hear it at all.  If the parent actually does open up and start to talk about *very quickly* becomes painfully obvious that the person who asked only wanted the parent to smile and say, "Fine!" Because the person who asks will quickly get an eyes-glazed-over look if you actually start to explain...or really say anything more at all than the, "Fine!" that they were expecting. 
So really, it's much better for all involved to not even ask if you don't really want to know.  Sometimes our reality is hard and painful and terrifying.  If you don't want to deal with that ~ you truly don't have to and that's ok!  So it's best to just not even ask if getting the answer will make your eyes glaze over. 
Please don't ask questions like, "So, do you think your child will even be able to function as an adult on their own?"  Ugh.  Really?  Seriously?  Ok here's the thing, when you have a sick child who will, in some form or fashion be sick the rest of their lives, this question haunts your days, keeps you awake at night and is the subject of your deepest prayers and the cause of your darkest fears.  Please don't take someone's biggest fear and plop it out on the table in front of everyone at the Ladies Day church dinner.

Just don't do it. 

Because as well intentioned as I'm sure your question is, it's damaging to that parent for you to ask it.  Your day will move right along as happy as you please and that parent will be fighting back tears all day.

Lastly, try to always see the child as a person outside of their illness instead of someone defined by it.  When you have occasion to speak to the child, ask about hobbies and school work and favorite movies.  Don't be afraid to joke around and have fun with them just like you would any other child.  Because I'll let you in on a little secret.  As hard as it is to be the parent of a chronically ill child ~ it's a cake walk to being the one who has the illness.  And many times when someone finds out that a child has an illness...they don't know what to say or how to act so they simply, quietly back away and will have nothing more to do with them.  And they notice.  It makes them feel like their illness costs them potential friends and sometimes ends what they thought were strong friendships.  It is alienating.  And that's really sad.  Because a person isn't defined by their aches and pains and ailments.  There is still a real, breathing, caring person inside that body and they are smart enough to know when you turn your back on them. 

So take care.
 It's easy really. 
You just treat them the way you would want to be treated. 
It really is that simple.



Bible Babe said...

Thank you for this post, Miz V--I have always wanted to say this to folks who ask about my son, but never could find a nice way to say it. Once a woman whispered "What is wrong with him?" I replied, rather loudly, "People who whisper stupid questions!" {{SIGH}} I just don't have a lot of tact, ya know?

Mrs. V. said...

Lol, I can actually picture you saying that Evelyn. But you know what? Good on you for doing it! Sometimes we have to speak up in these situations. Our kids need to know that we will do that for them. It's important.

Anonymous said...

OK--I must make a comment. Thank you. Although i seem to have done most things right in speaking with dear friends in the same situation, I fear that I may have been completely foolish on other occasions and stumbled instead of encouraged. Ouch! However, I'm humbled, and that's a good thing. Indeed, God has been gracious and given me a challenged child within my own circle, so I'm now more sensitive than ever--and on the receiving end for a change. Your message is most timely.

Mrs. V. said...

Thank you. I'm glad you found value in what I wrote. I'll admit that I've been thinking about this post all day and....I'm rather proud of it, lol. It just felt good to get it "out there" and really say things I've wanted to say for a while.

I'm glad that my perspective can perhaps help you as you try to navigate your relationship with a parent and child in this particular boat. I know it's hard on your side of the coin as well, trying to do and say the right things as opposed to the wrong ones. (hugs)

Delisa said...

Hi Mrs V! Thank you for this insightful post. We just found out tonight that a friend's baby is very sick and in the hospital. Your post is a wonderful reminder of the importance of having real empathy. Thank you again, this has been very comforting and helpful. Delisa

Mrs. V. said...

Delisa ~ I know you understand these things more than most do. I'm going to try and get my daughter to read your blog. I feel you have much in common with her and it would do her good to see others who understand the navigation of this world in the same way she does.

Bible Babe said...

Well, if you liked that--you will love what happened today while we worked at the local food bank. There was a woman there, who when she noticed my son was different, said loudly, "OH, I HAVE DISABLED GRANDSON!" I just kept on helping my son get his coat on, and when I opened his back pack and said, "Hey, there are my gloves I couldn't find", she said, "OH, MY GRANDSON DOES THAT TOO! HE JUST TAKES ALL KINDS OF LITTLE THINGS AND HIDES THEM!" {{{GRRRRRR}}}I quietly told her that *I* had put the gloves in there and simply forgotten. Then we left quickly, because I was about to SLAP the new volunteer into next week!

Fiona said...

Thank you for this post. I am afraid of saying the wrong thing so often don't say anything. Best wishes.