Lessons of Lupus

#suckit ...my poor baby
As a parent, I don’t know many more scary things than a sick kid. Add in a chronically ill mother and what is usually just part of childhood becomes an uncomfortable conversation.

Mom, that stuff the doctor said I had to take…that’s the same stuff you have for Lupus.

You mean the prednisone? Yes. But it’s just a steroid to help your chest. You will only have it for three days, I had it for many, many months and lots and lots more of it.

But I don’t have Lupus, right? So why would I have to take it, if it’s for Lupus?

No honey you don’t have Lupus. It’s a steroid they give a lot of people for a lot of reasons. You just have an infection in your chest, so they are using it very, very quickly to get rid of the infection.

But Mom it’s for Lupus.

No, it’s not. A lot of people take it for a lot of things. Lupus is just one of them- and look, I am not even taking it right now. I’m getting shots and IVs with a different steroid. There are all kinds of steroids. This is just one, and this one you will take for only three days. That’s it. Then you are done.

But it’s not because of Lupus, it’s because of my infection….

Right. Exactly.

And thus the conversation went. And I realized just how much those little ears hear. Just how much they have had to learn about things they shouldn’t be bothered with at this age. And just how much more I want to hug them and protect them from this stupid, horrible, life changing disorder.



  1. I’m sure it’s hard to understand. I agree it is a stupid, horrible disease. My mother-in-law had it, and it was awful. I am so sorry you have to go through it too.

  2. SO heartbreaking, buddy. Ugh. If I could drop kick Lupus, I would.

  3. They hear it, and they know you’re sick, and no, you can’t shield them from everything. There is a side effect to watching a mother be sick, though, and it’s compassion. Your kids are having to deal with adult problems early in life, but their capacity to empathize with others is the side effect of that medicine. They are incredible kids who will go on to be incredible friends, companions, partners and parents, if they so choose, and they will never helplessly look at someone with a sick family member and mutter they can’t possibly understand.

  4. It must be so weird to be a kid living amid difficult truths happening to his parents. The other day I was telling a story about my friend who died last month. Kyle said “Why are you talking about Auntie Lisa? She passed away.” And that is when I realized that a 6 year old who had no previous experience with death must be forming his own ideas of what it means. I also hadn’t realized that her sudden passing caused him to know that it can happen to me, his dad, or anybody he knows, at any time. How terrifying for a little boy.

  5. I think, in a way, it’s good for them that they understand people all around them deal with hard things. Be it illness or lack of money (we’re doing a lot of charity this year to show the kids how lucky we are, etc…or trying to do what we can anyway) and it makes them feel somewhat better about their lives…even when it’s HARD. And yeah, death comes up a lot. My Aunt recently passed away and when I brought her up the other day my son asked me not to talk about her, because it made him too sad. And he had only met her once that he could remember. Kids process things so differently. I figure if we just KEEP talking, they will learn more and hopefully grow more…I just hate SCARING them more. That part I could do without.

  6. So sorry your son is sick enough to require steroids. I hope he’s on the mend and feeling much better.

    It’s amazing the things kids pick up and the impact those bits and pieces of conversation have on them. I know I’ve never had a kind word to say about steroids so I can imagine how it must have frightened him.

    Hang in there. I hope the two of you are both feeling good.

  7. Jennifer Vest says:

    🙁 So sorry that Jackson is ill and especially that he (and all of you) have to deal with this disease. Sad that he has to worry about his mama, and now his own health in relation to yours. Looking forward to getting to know my niece and nephew that I don’t know nearly enough of! 😉 Love, Jenn

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