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My Fear That My Kids Will Resent Me for What I Can't Do Because of Lupus

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I hope I’m not the only one who has days such as today where I feel like I will be receiving a ribbon reading “Worst Mother Of The Year 2016.” I went to bed early last night from not feeling well, only to wake up feeling worse. Lupus is so unpredictable you never know how you will feel from day-to-day. The pain I am feeling today is excruciating from head to toe, not only physically but also mentally from knowing I will be disappointing one of my children to no fault of my own.

Today is my daughter’s band concert, but there is no way I will be able to go. I feel as though I cannot even crawl out of bed if my life depended on it. Lupus wins again! The feeling of defeat can be so overwhelming — wanting to please everyone when you physically cannot due to a chronic illness.

If the disease itself isn’t controlling my schedule, there are days when medications to help control my illness are just as hard on the body. Chemotherapy is one course of medications used to treat my multiple autoimmune diseases; this can be very hard on my body physically. There are days it’s impossible to function just from medication alone, let alone adding the lupus itself to the equation.

I often fear my children will resent me one day for all that I cannot do, but I hope that as they get older they will realize I do the best I can. For now that is of no solace to them or I. I feel like life is punishing them and me on days such as today.

There is nothing that anyone can say or do to make you or your child feel better in these situations. It feels unjust. We haven’t chosen to live our lives with a chronic illness, yet it feels as though it’s a penance every time you must excuse yourself from attending an event for your child. 

As a mother you want nothing more than to be by your child’s side, being their biggest cheerleader in all that they do. When your illness doesn’t allow for those moments it can cause such despair. Life is altered not only by the illness itself, but also by the aftermath these illnesses bring into our lives. Not only are you dealing with your own and your child’s disappointment, but also you must deal with other parents gossiping about how you’re not at your child’s events, or at a PTA meeting, or volunteering for field trips or class mom. If only everyone knew I’d give anything to be able to do all or any of those things! I want nothing more than to be the active mother in the classroom, or socialize with other parents planning school dances, etc. Unfortunately this isn’t my reality; this is out of my control. Lupus decides what I can and cannot do on any given day.

I can only hope that when my children are older they see that it took strength to make it to the events I could, and the grief and courage it took to say, “I am sorry I cannot make it today” to the events I couldn’t attend. I hope these disappointments will not be seen by my children as a failure as a mother on my part, but allow them the opportunity to have empathy for others and what they may be going through.

Originally published: July 15, 2016
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