At a recent lupus event, I had the pleasure of meeting a lovely young lady who was volunteering her time with the lupus charity sponsoring the event. She was in her mid-twenties, and her mother had lupus - thus, she was giving her time to a cause that was very close to home. As we began talking, I learned that her mother had, in fact, passed away from complications with lupus just a few years ago. We talked about the symptoms and side-effects of the disease, about her mother's manifestations, and we talked about what it was like for me to live with lupus. She'd heard of my book, and was interested to hear more about what it was like having lupus as a mother of young children. And as I talked, I realized (and she concurred) that she saw me just as she saw her own mother years ago - dealing with lupus while trying to create a normal, stable environment for her family.
I think I had just as many questions for her as she did for me - as I was anxious to hear what her perspective was as a kid growing up with a mom with lupus. Perhaps Deirdre and Bernadette will find themselves in a similar situation some day - conversing with a lupus mom and comparing notes with their own upbringing and experience with lupus. My hope is that when they do find themselves engaged in that conversation, they'll be able to say that their mother is doing well - that she's alive and kicking - thriving, despite her chronic illness.
Of course, that conversation provided a little wake-up call for me - serving as a great reminder of the things I can do to try and ensure that outcome. I know I say in my book that we have to limit our "shoulds"...but in this case, these "shoulds" are mandatory:
That nap - I should take it.
That stress - I should diminish it.
That sun exposure - I should limit it.
My medicine - I should take it.
My life (with my girls, with a supportive husband, without lupus symptoms) - I should cherish it.
I say I would do anything for those little girls. Now it's time to make it happen!