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.