Wednesday, July 21, 2010

Fleeting feistiness...


Deirdre has officially entered the independent stage - (god help me if this isn't it!) She wants to pick out her own outfit (asking and then directing me to sit down across the room while she roots through her drawers for an appropriate get-up), dress herself (even though she asks for help...), and asks to sit in a big girl chair (i.e. anything that ISN'T a high chair), among many other instances. I know, I know - she's turning two in a few months...and this is normal...but hopefully, it's temporary, too.

This morning, we went over to play at our neighbor's house, and Deirdre insisted (which means there was much crying and flailing involved) on wearing a dressy dress with frilly socks and tennis shoes. She looked cute as a button, but perhaps not the ideal outfit for sliding, swinging and running around in the sandy playground. (Oh well - that's what washers are for. And I can say that, now that ours is fixed.)

And as much as I enjoy watching her exert her independence, learn (and use) new words with authority, I'm happy to hear that this stage is a bit temporary, or so says my neighbor. I know she'll continue to change and grow and learn, but I would imagine her feistiness will subside. Probably not sooner than later, especially with a baby sister or brother on the way - but none the less, temporary. Just as everything seems to be with kids - the good stuff and the not-so-good stuff - it's all fleeting.

And this reminds me of one of the more frustrating aspects of lupus - the not-so-fleeting part. The part where the disease sticks around forever. The part about not knowing when the symptoms are going to subside during a flare, and the fact that some of them might not ever go away.

That said, I'm a fairly positive person, and I firmly believe that you can live a pretty decent life with a chronic illness. I know for a fact that life with the disease can improve, and that you have the power to make it better. It's not always easy - and it doesn't come without concession - but it can be done. I think accepting that you have the disease, and then saying, "alright - now what am I going to do to live well, despite it" is key. And while I wish being symptom-free and having disease inactivity could be an absolute, permanent fixture in life with lupus...it's not.

Shall I kick and scream and be feisty like a two-year old? Nah. There has to be a better way, don't you think?

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