Treasured Family Moments Stolen by Lupus
Tonight my daughter, Lizzy, is singing with her chorus at the national anthem at our local Minor League affiliate. Instead of cheering her on with the throng of other parents armed with cellphone cameras and school spirit shirts, I’ll be home, in bed.
Yet again, Lupus has reared its ugly head and intruded on another fun family function. Yet again, my husband and children will have another experience, make memories, and come home to “kiss mommy goodnight” while they regale me tales of the event, the aroma of popcorn clinging to them as the words tumble out. I will smile and usher as much enthusiasm as I can, holding back the tears I never want them to see. While I love that they come home and share the joy and details, it also hurts so much that, once again, it’s just a reminder of another treasured family moment stolen by lupus.
My son, Ryan, was only 6 when I was diagnosed with lupus. Now 13, most of his life has been lived with the specter of lupus hanging over it. Yet, despite this, or perhaps because of it, he is one of the most caring, loving, patient teens you’ll encounter.
When I have to miss out of yet another band concert or a trip to the movies, he’ll bend down and give me a kiss on the cheek saying, “Don’t worry mommy, you just get the rest you need.” He’s been known to make me breakfast in bed, entertain his sister when I’m having a “rough day” and keep things running.
There is certain sweetness and kindness he possesses, a willingness to cuddle with mom and tell her about his day, slowing down from the hectic realities of his day that is not usually seen in the average teen. He’s been handed an unfair burden that I would give anything to unload, but he never complains. When I beg him to share with me his stresses, he deliberately leaves out, “Mommy’s sick,” because he would never want to hurt my feelings. This is something we need to work on since it’s too much for my sweet boy to hang on his shoulders.
Lizzy has never known a mother that wasn’t sick. At 9 years old, lupus has always been another family member, seated in the corner, quiet some days, unassuming and still. Other days it is the terrible infant, throwing tantrums and upending our lives.
In her young life, Lizzy has grown accustomed to dropping mommy off at the ER, not knowing if this will be a “short trip” (coming back tonight) or yet another four to five day stay for mommy in the hospital. We’ve tried to make these as “normal” as possible as Lizzy just takes them in stride, jumping into the hospital bed with me and stealing whatever sweets she can from my dinner tray. She has a resilience and strength not often seen in one so young. Her self-confidence is astounding and she has a charisma that draws people to her.
I’m one of the very lucky ones. I have a devoted partner in all of this – my husband. EJ has too often become mother, father, nursemaid, chauffeur, cook and everything else. He picks up the slack and makes sure they get to religious school, scouts, play dates, birthday parties and more. Without EJ, I don’t know what would become of us, which is a thought that keeps me up nights.
Yet, I worry, I always worry, what is the impact growing up with a “sick mom?” Will the kids resent me for all I missed? What are the long -term effects for my kids? How will having a sick mom impact future relationships? As one doctor I asked these questions to loved to say, “My crystal ball is broken.”
For now, I need to just love them as much as I can and let them know that even when I’m not there in person, I’m doing what I need to to get well enough to be there for the next event, the next concert.
I’m so sorry I can’t be there to hear you sing tonight, Lizzy, but Lupus won this battle. But I refuse to let it win the war!
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