living with lupus, day by day, moment by moment

“Up, mom, up” , , , my two year old son moaned during his sleep.  At the time, he did not understand why his mom was always laying down and not playing with him.  I did not know that my illness touched him so deeply that he would dream about it.

It broke my heart.

I became pregnant the same year that I was newly diagnosed with lupus.  So I do not know what motherhood would be like without lupus and my son does not know a mom without lupus.  During his first six months, i was getting progressively sicker.  I still tried to do everything, however, and maybe because I pushed so hard,  I ended up being out of commission for the second six months of his first year.  I still remember taking my son to a mommy-and-me sing-and-sign class and not being able to get up from the floor to join in on the dancing.  My health spiraled out of control rather quickly from then on and soon I was bedridden and fighting for my life.  I missed a lot of his first moments, the first teeth, the first crawl, etc.

When i came out of my haze, i faced a long road to recovery.  My son did not quite know what to make of me and my presence.  From 6 to 12 months, his main caretakers were his dad and his grandmother.  He must have thought, “who was this new woman sitting and laying near me all day?”  My interaction with him were very limited his first couple of years.  It usually involved a lot of sitting and observing.  With always another caregiver around, I would accompany him to the museum, or to the park, and sit on the bench while he played with his dad or grandmother.   At home, I would be in bed or on the couch, watching him play.  I was always around, but never really there. It was incredibly frustrating to not be able to care and play with your own child.  There were lots of tears of heartbreak.

My son’s growth and my rehabilitation happened in tandem.  Now three, my son is less in need of care (that i cannot provide) and more in need of company.  While I still cannot do a lot of things, I have figured out what i can do as a “sedentary mom”  For example, I leave active sports to his dad, while I engage him in crafts and baking.  There are still many times of the day where i cannot be fully engaged.  I always feel bad but I like to think I am raising a more empathetic son.  The other day, when I needed to lie down and rest, instead of tugging at my arms to “get up” he grabbed the iPad and sat next to me.  He kept me company while I relaxed and this time, the moment warmed, rather than broke my heart.


Letting the teacher take on the double rainbow pose with my son. While I enjoy going to yoga with my son, I am not able to partake in many of the challenging poses. He still loves it!

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