May. 11, 2017

Meaningful Messages for Mother’s Day

When you have lupus, it’s all too easy to worry about not being a good parent. Fatigue, pain, brain fog, flares, hospitalizations, medication side effects—living with lupus doesn’t leave much energy for anything else.

In the midst of keeping up with day-to-day obligations, you may not be thinking about teaching life lessons to your children. But you are. Every day, they are learning about courage, perseverance, and patience—from your example.

This Mother’s Day, we asked three moms with lupus—Jana Eshaghian, of Los Angeles, CA; Sara Gorman, of Alexandria, VA; and Erin Maciag, of Milford, CT—to talk about what they think their children are learning.

Gorman, author of Despite Lupus: How to Live Well with a Chronic Illness, believes that children are able to learn compassion at a very young age, because she sees it in her own daughters—Bernadette, 6 and Deirdre, 8. “I remember we were walking to school on one of the terrible cold days last winter, and Deirdre had forgotten her gloves. So I said, ‘Hey, do you want my gloves?’ ‘Oh, Mom,’ she said, ‘you need those, your hands and fingers will turn purple!’—because I have Raynaud’s as well as lupus.  I said, ‘You know what, I’m going right back to the car, so why don’t you take them for school.’ ‘Are you sure you’ll be all right?’ she asked. And I said, ‘Absolutely.’ So she took my gloves, and when she came home from school, she didn’t forget: she handed them back to me, and said, ‘I know you need these.’”

When disappointments threaten, Maciag, 31, mother of six-year-old Abigail and four-year-old James, says that her children have learned to accept new ways to create experiences. “In 2015 my husband’s family was getting together the weekend of Easter,” she remembers. ”I was feeling exhausted and had a slight fever due to lupus. I knew if I went it would completely derail my week, because I’ve had experience now in that. And so as hard as it is to make those decisions where you can’t attend a special event like that, I’ve had to not only educate my family but also give myself a better mindset about it—that it’s just a date on the calendar and we can always get together at a different date or make Easter on any day of the month. We explained to the kids, ‘Mommy can’t go with you to Nana’s, but when you come home on Sunday we’re going to do an egg hunt with Mommy at the house.’ And they understood.”

And Eshaghian’s daughters Sarah, 23, and Hannah, 21, whose mom was diagnosed with lupus when the girls were 10 and 8, offered these thoughts:

“Having a mom with lupus taught us to become more independent—how to make a school lunch, how to do laundry without turning everything pink, how to make pancakes on a Saturday morning, how to take out the trash. Helping out at home made us feel confident and more ‘adult.’ We were also the most prepared college freshmen of anyone else we knew!"

“We don’t really remember being disappointed by Mom not being able to go places or do certain things. We understood she could do some things and not others."

"Still, we were hyper-aware of Mom’s illness when outside our home—part of it was an instinct to protect her and part of it was being an adolescent and naturally being embarrassed by your parents! But we were never embarrassed by the fact that she needed to use a scooter, a wheelchair, or a cane. In fact, we would have liked it if Mom had asked for more help instead of overexerting herself and paying the consequences later. A child can sense when a parent is having a difficult time, and it was hard to watch her struggle. Watching her, we also learned that in the face of adversity, whatever the situation, you just do the best you can."

“Most of all, growing up with a mom with lupus helped us realize that everyone has their own trials and tribulations, and you can’t tell by looking at someone what they’re going through. It heightened our sensitivities to other people’s needs and increased our caregiving abilities. Today we’re grateful to be who we are, and we know that our characters were formed, largely, by how we were raised."

Thanks mom!

This Mother’s Day, make a gift to honor a loved one with lupus and improve the quality of life for all people impacted by this devastating disease.