All-star parenting : it's still possible with lupus

A few weekends ago, I felt like an absolute all-star - an all-star parent, that is. It was a lovely Saturday afternoon, and Johnny had taken Deirdre out for a few hours. I put Bernadette down for a nap, walked into my bedroom for my nap, and promptly fell asleep. Two hours later, I woke up, Bernie still sawing logs in her room, and Johnny and Deirdre still out and about. Thirty-minutes later, Bernie woke up, and I anxiously went in to get her, as I was refreshed and ready to go. I felt like a million dollars - like a normal parent who rests when her kids do and gets up when her kids get up. I felt self-sufficient and capable, and it felt great to be able to take full responsibility for Bernie - rather than to rely on help from a babysitter.

Of course, Johnny was helping out tremendously with Deirdre, so essentially, I did have help. But I couldn't shake the fact that being able to independently care for at least one daughter gave me a boost. A feather in my cap, if you will.

So what does that mean? Does that mean that during the week, when I have a babysitter help with the girls while I finish my nap, that stellar feeling of self-sufficiency is decidedly absent?

Maybe yes, maybe no. But what it does tell me is that I need to remind myself that just because I have to nap, just because I need babysitting help, and just because there are some things I can't do for my kids as well I wish I could  - that doesn't make me any less of a mom. Not even for one moment.

Don't misunderstand me - I'm not consciously thinking these ill thoughts about my abilities to parent. But the fact that I felt so good about single-handedly taking care of Bernie made me realize that perhaps these thoughts do cross my mind, subconsciously.

So I'm nipping them in the bud - and I'm reminding every other mom out there to do the same. Just because we have lupus - with all of the limitations and accommodations that come with it - doesn't for one moment mean we can't be the best moms on the block. Yes, there are sacrifices, and yes, there are days when we do more snuggling than playing, but quality time is quality time. And as referenced on Wednesday, my girls are pretty darn happy just watching their nails change colors. Sounds pretty good to me, too!


Debs said…
Everything you think about here is right, if my experiences are the norm for one with a chronic disease. My children do not remember the times I was crying after they left the house to do something I wanted to do with them. I've asked them about this or that over the years & they don't remember the event as I do, trama for me that is. Like you, I have a great husband who was there & Dads did/do more like field trip sponsors, etc. It's not strange to see Dad with a camera at the meeting place for homecoming pictures, or working in the concession stand.

Something that I think is a good thing, the kids did things other kids their age didn't do. The peanut butter was on a low shelf, with paper plates so they could make their own sandwiches. Some days they made their own lunches with peanut butter crackers, apple sauce containers, chips, etc. Whatever was in a special place for them. They helped me sort the dirty clothes & turn all their socks right side out. Of course, these stories are made of some urban ledgends now with child labor violations & doing the laundry when they were 6 yrs old.

I tear up when I think about "moments" like seeing my husband eat a hot dog with mac & cheese our kids made for our dinner cause Mom wasn't up to it. And when Grandma was discharged from the hospital to go to rehab, our daughter knew exactly what to pack from her home for her, including her favorite calendar. Our son made sure someone took Grandpa out for lunch so he would get a break from sitting at rehab. Or he drove through a drive up to get Grandma's oatmeal cookies. They even know to go to lost & found & look for a cell phone charger for those emergency room visits for grandparents. Fortunately, I haven't had hospitals stays due to lupus, but for previous surgeries prior to diagnosis.

They weren't in 3 clubs or sports in a season, just one. They were thrilled when piano lessons had to go & I gave in & closed the door on dirty bedrooms. There is the time someone went to school with a skirt that was too short for dress code because I was sleeping later. I found out that ALL 16 yr old boys wear pants that look like they slept in them so I shouldn't think "what will the other Moms think of me?".

Choosing wisely takes planning. Have no regrets. Choose what is best for your family. There's no manual for this stuff, as you have shared so many times.

I am very proud of our young adult children. I don't think they had it bad because they helped with chores or their Mom didn't make their beds for them every morning. While they were growing up, I wasn't so sure we were doing ANYTHING right. But isn't that a normal parent thing?

Would I do some things differently? Sure, I think we all rethink our choices. Every family deals with something. We just happen to have lupus to deal with.

Thank you for helping us get through this lupus thing & for remembering the times, we did things well, despite lupus.
Jess said…
As a young woman with a mom affected by Lupus, I wanted to tell you how daughters (and sons!) truly feel about our mothers. First, we KNOW you are a rock star! One day your daughters will understand that Mom needs a few hours in the day to nap and that Mom can't be running marathons with us every day - she might have to skip soccer practice, and that's okay. I make sure I do as much as possible for my mom now that I am 21 years old. We think of you as a rock star, and even when we push your buttons we promise think you are awesome!

My mom has also had Lupus since I was a baby, and even as a child I began to understand it took so much for her to be who she was - a working mom with an illness. We understand. We will make dinner if you need us to, we will fold all of the laundry, and we will vaccuum for you, even if we whine and complain the entire time! My mom plays the "no I can do it!" game with my step-dad and I all the time, to which we sometimes have to grab the swiffer out of her hand and force her to go lay down. We know. And I promise you that your amazing daughters will do the same things I do. :)

And no, we will not think you are weak because of it. I actually find my mom to be one of the strongest women in the world! She is my superhero, and we know how hard it is for you. We will walk you to the shower if we have to, or make you tea when you can't do it for yourself. We understand. We always will. Never underestimate that, and never think of it as weakness. We love you. :)
Sara Gorman said…
Debs - Thanks so much for sharing your experience and citing so many fabulous examples! I, too, feel like things tend to go awry when I'm not "on duty" - like your skirt example - but in the end, I realize that nothing is too catastrophic or beyond repair, and in most instances, the incidences become a source of amusement for our young family. And I can't TELL you how many moms with lupus have told me that they've witnessed their kids being that much more aware, that much more capable, that much more caring because of what they've experienced with a parent with lupus. Sounds like you and your kids have managed beautifully, too. Thanks so much for taking the time to comment.
Sara Gorman said…
And Jess - Wow. I hope you've cut and pasted your comment into an email and sent it on to your mom. She needs to read your beautiful and heartfelt words!! It brings me to tears to read how you feel about your mom - simply because I see the same kind of admiration, love, and affection in the faces of my daughters everyday that you so eloquently described. They do love their rock star of a mom - I know that - I just need a little reminder now and again that lupus doesn't change that one bit. And comments like yours and Debs drive home that fact for ALL of us!! Thanks so much for sharing. said…
Hi Sara,

First off, I came across your site and wanted to say thanks for providing a great resource to the lupus community.

I thought you might find this infographic, which displays the effects of lupus on the body,interesting and helpful for your readers:

Naturally, I’d be delighted if you share this embeddable graphic on , and/or with your followerson social. Either way, keep up the great work Sara!

All the best,

Nicole Lascurain | Assistant Marketing Manager
p: 415-281-3100 | e:

660 Third Street, San Francisco, CA 94107 | @Healthline

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