Do my kids understand lupus? I'll go with "Enough for now."

The word "lupus" comes up in our household a lot. I talk about it, blog about it, speak about it, and write about it. So it's fair to say that my girls are pretty familiar with the concept.  The wonderful  Fairy and the Wolf  book has helped, too. It always finds its way to a special spot on the bookshelf for easy retrieval.

But you can never be sure if the two little ladies ruling this roost really get it...although this past week, it was confirmed that they at least know enough.

Tale #1: Last week, after I put Bernie down for a nap, I was running around, trying to unpack just one last box before heading upstairs to nap myself. Deirdre looked at me, looked at the box, and said, "Mom, don't you think it's time for your nap? If you don't rest, your lupus is going to get really bad." 

Yes, Deirdre, you're right. One point, daughter.

Tale #2: A few days ago, I overheard Deirdre and Bernadette playing princesses. Clearly, Dee was in charge, and she was doling out tasks to Bernie. She said, "Guard, your only job is to make sure that the queen takes a nap."

Oh my. Am I in trouble or what?

Tale #3: It was cloudy a few days ago, so the girls and I headed outside to do some much needed gardening (clouds = shade for me, and cool temps for the gals.) We all put on our gardening gloves, doled out the spades, and went to work. I'd planned to pull weeds in at least one section of our "garden" (a loose definition, mind you), which should have taken about 30-45 minutes. Granted, that's about twice as long as my arthritic-prone hands can take, but a task is a task.

After about 15 minutes, Deirdre declares she has to go to the bathroom. She runs inside, and Bernie casually follows in after her. I, of course, have no intention of stopping, since we were only halfway finished. But when I hear Bernie rustling around in the mudroom after a few moments, I peek my head inside. There she is, gloves off, shoes and socks removed, heading to the sink to wash her hands. I ask her what she's doing, and she declares that we're finished gardening. I say, "Oh, Bernie...we still have a lot of weeds to pull." And she says, "No, Momma. We're finished with weeds. It's time to come inside."

Now, I know she wasn't personally monitoring me or my joints...but whatever timetable she was keeping, it was better than mine. I, of course, followed her lead, packed up my spade, and went inside. My joints thanked me for the days that followed.

So while the boxes aren't unpacked, and the garden isn't weeded, I can rest easy, knowing my girls have the lupus basics all wrapped up.


Anonymous said…
This was a great rad! Made me tear up thinking about how loving and daring those girls are. I hope someday my daughter can be like that with me... I can't even get my own husband to care for me like that :/
Katie Rice said…
That is so sweet!!! D and B know what matters in life!
Liz said…
Hi Miss Sara,

I've been reading your blog for a while now. I'm not diagnosed with SLE but with undifferentiated connective tissue disease. My symptoms haven't gotten better with medication, not significantly, and I'm starting to feel like it's all in my head, that I'm just overweight, that I need to just do better, be better, stop being bad at what I am doing, etc

Reading your blog makes me feel a little bit etter, that things can be okay.

I ordered a pillfold today. I'm feeling so down with that stupid big plastic pillbox that clatters and doesn't stay closed, that everyone sees and knows what it is, etc

I just wanted to thank you for your posts. I've sometimes thought of going to your events (I live in MD, close to DC) but I'm too shy, and so tired.

Just thank you.

And your daughters are so sweet. I think all people have this innate understanding of what is good, when people feel unwell. Your daughters sound lovely.

Thank you,

Sara Gorman said…
I'll keep my fingers crossed for you. Feel free to leave the computer up to a blog post sometime...maybe if he reads about someone else, he'll see you and your lupus in a whole new light!
Sara Gorman said…
Probably because their aunt is helping to teach them compassion!
Sara Gorman said…
Oh, i hope you make it to an event! if so, be sure to introduce yourself. i'd love to say hi. Maybe the nov. 2nd symposium in baltimore?? :) thanks so much for sharing, and for your honesty!

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