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 it....it *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.