Having lupus has meant a lot of things to my family. It’s meant weekly doctor visits, sleepless nights, missed choir and band performances, and too many cancelled vacations to count. When I wasn’t sick from lupus, I was working just to maintain my health insurance. Living with lupus has not put me on the top of the list for the mom of the year award. The struggle to be “The World’s Greatest Mom” is a real one, whether you have lupus or not.
I went back to work directly after each of my boys was born. Once they were school age, I volunteered at their schools regularly. I had both heavily involved in sports and was eager to fulfill my role as a parent-coach. The boys had structure and stability, and I was a top contender for “The Mom of the Year.”
Unhealthy by birth …
I remember spending my 30th birthday in bed, having been to the ER for a kidney infection the day before. I had no reason to suspect anything was wrong with me. Yet, it seemed like there was always something wrong with me. A UTI over here, a cold that wouldn’t go away over there. I assumed it was because of the small children in the house. I thought I was just a sickly person. Unhealthy by birth, but still able to win “The World’s Greatest Mom” award.
By the time I was 33 the boys and I had moved to California, and I was visiting the doctor once a month. I was thankful to have a job that covered my insurance, and even more so once the medical bills started pouring in. Every year I upped the insurance, and every year it was something new. When the arthritis finally reared its ugly head, my life, and more importantly my boys’ lives, were forever changed.
I could get used to this bed rest thing!
I was put on bed rest the first time my foot swelled. The joints in my ankle were red and hot to the touch. My little toes peeking out of the ace-bandaged foot propped up on my pillow with an icepack. I remember thinking, while staring down at my foot, “I could get used to this.” I was Napoleonic in ordering my boys around, even feeling a little bit of joy while saying “You guys have to help me out. I am sick.” I had no idea how many times my boys would have to hear and respond to that phrase.
Tahoe in the winter, Hawaii in the summer
When I am feeling great, we are all feeling great. I feel like “The World’s Greatest Mom.” We head to the movies, play tennis, go hiking or pack up for the beach. Our vacations used to be spent with me working half the trip, but we always tried to get in as much play time as we could. We would go skiing every winter, and plan a destination trip for every summer.
But when I am feeling down, the entire house feels that, too, and I feel like “The World’s Biggest failure.” The curtains are drawn, and it is lucky if dinner is delivered. Some nights I sleep straight through dinner to awake in the middle of the night, scanning empty dinner plates, to make sure they have eaten. My son records his band and choir concerts so I can still watch him even if I am too sick to be there. Each year our planned destination trip gets a little closer to home.
These days we have more of the bad days than the good. Our outings to the movies have been replaced with movie marathons at home. Our ultra-competitive sports have been replaced with school sports, drama club and video game contests. I’ve noticed that their smiles were never replaced — because their smiles never left.
Every day I find myself a little more amazed at these boys I have been blessed to raise. Having lupus didn’t mean I was or wasn’t the best mom out there. It meant I had to stop caring. I don’t mean that in the sense that I didn’t care whether my boys are taken care of. Whether they are well-educated or happy. I mean that for once, I am able to stop living my life to others’ expectations and start fulfilling my own.
I don’t need to win “The World’s Greatest Mom” award to show I am a good mother. Every day when two teenage boys yell out “I love you, Mom” before they leave for school, I know I already won.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.