Lupus and Raising Kids: How we talk about the disease in our family!
This photo brings back some memories!!
Throwback to when the Gorman girls were part of the Lupus Foundation of America's summer magazine issue on Moms with Lupus years ago. We were all so much younger then! But I enjoyed talking about how I discuss the subject of lupus with my kids. It prompted me to repost and update this old blog post from when the kids were little:
Lupus in :60 - Lupus isn't a Bad Word:
I've always talked openly about lupus with my kids. Because I was diagnosed eight years before the first child came along, they've always known me with varying degrees of illness. My joint pain, hair loss, fingers turning colors in the cold (Raynaud's), my medication regimen, my frequent doctor appointments, and my ever-present daily naps are all fairly routine for them. While my husband and I don't share ALL of the gory details, we do want them to be comfortable talking about the disease, asking questions, and educating their friends. After all, lupus isn't a taboo subject, at least in our family!
I remember one of the first times my oldest daughter had the opportunity to put her lupus knowledge into practice. It was a typical afternoon, and I was heading upstairs to take a nap. Deirdre was five, and Bernie, three. Johnny was settling in with the girls, and a neighbor girl came by to play. She's over often, so as I was heading up the stairs, I said hello, and mentioned that I was heading up to take a nap. She said very thoughtfully, "You know, I've never thought about it before, but my mom never takes a nap. I wonder why not?" I looked at Deirdre and she looked at me, and before I could say anything, she launched into an explanation. She explained how I have a thing called lupus, and it makes me really tired and it can sometimes make me a little sick. But if I take a nap everyday, I feel much better and I won't get sick.
Go, Deirdre!! ♥️ I congratulated her on her thorough and accurate explanation, and couldn't help but smile all the way to my room. Whether or not those little girls truly understand the effects of the disease, they at least know that lupus is not a bad word. It's not something to whisper about. And it's not something to keep hidden. So proud of my little munchkin!
The Mom article and the words I wrote years ago remind me that the conversations around our house are the same today. The girls are STILL explaining to their friends why I take a nap. These days, the explanations are a little more customized, depending on how much they feel like sharing. But one thing they always mention is that it's not contagious. Hallelujah to that!
But undoubtedly, with each year, they have learned more and listened more intently, and they continue to amaze me with their compassion and consideration for their mom, despite her chronic illness. ♥️