living with lupus, day by day, moment by moment

It happened shortly after my son Harry turned six.  After a (not unusual) episode of witnessing my irritability, he whispered “I’m sorry you are so tired mom. I know it’s Lupus.”

It absolutely broke my heart to hear him say that. 

While I am glad that he is able to sympathize, I hate the fact that he is exposed to this side of me — sick, irritable, forgetful, anxious, pained, fatigued, sad and zoned out.  I hate it because while I am able to put on acts of normalcy for the rest of the world, they are in short spurts and I cannot do it long term for my son. I hate it because the kind of empathy my son gained at such a young age (only six!) comes at a hefty price of growing up with a mom with many limitations. 

Most of all, I hate that my son is growing up thinking that living with someone like me is normal. I try hard everyday to limit how much my illnesses poison our days but it’s so hard. And the guilt, it’s always there. 

2 thoughts on ““I’m sorry you’re so tired mom.”

  1. I’m so glad you wrote this. Tough words, but my six-year-old girl has said the same. Heartbreaking 💙 But hopefully their experiences with growing up with a chronically sick mom, will help them develop even more compassion and love for their surroundings. Big hug, we both need one 💙


    1. Hugs back to you mama. It’s not easy for them but hopefully they know that they get the best of us.

      Liked by 1 person

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