living with lupus, day by day, moment by moment

“So it’s summer break now, what’d you like to do?”

My son just graduated from preschool and has three months off.  I signed him up for a full month of summer camp in July, and August will be crazy with welcoming the new baby; so I promised him that June will be free time for me and him to explore the city.  Just us, before the baby comes. 

“I’d like to go to the Bronx Zoo, Coney Island, the Math Museum, the Freedom Tower, . . ..”

As he prattled on with his wish list, my heart sank. I knew that I won’t be able to do almost all the things he wants to do.  Even with help, I physically could not handle these trips.  It broke my heart. 

“Ok, you know mommy can’t do the Bronx Zoo.”

“Why not? The last time, I sat on your lap on the wheelchair.” He reasoned.

“Yes, but papa was there to push it. It’ll be too much without him.”

My son looked so disappointed. 

“BUT, we can do the Central Park Zoo with grandma.  That’ll be fun, right?” I offered.

“Yeah, I guess that’ll be ok.” He tried to hide his disappointment but at five, he is already understanding that mommy just can’t do a lot of things.

Being sick means constantly having to negotiate what I can or cannot do with my body. It becomes more difficult when you have to add another party to that negotiation, and its your own child’s expectations that has to be managed. I wish that I was a healthy mom that can do things with him.  He has only known me as being someone that cannot do much, always sick, always saying “but mom is too tired, too sick….”  He has never known who I was before I became sick.  I wish I could show him that I could have been like other moms, that I could have been strong, energetic, fun.  Wishes.

2 thoughts on “#lupusmom (June 2016)

  1. Genie Fabian says:

    Linda, I honestly don’t know how you do it. Your inner strength and resilience is absolutely extraordinary. I cannot begin to imagine what you’ve been through or what you go through each day. I think about you and your beautiful family often, and always send thoughts and prayers that your days will get easier. One day, your kids will understand. And their hearts will burst with love knowing how hard you worked and what you endured to not only bring them into the world, but give them as much of a loving, happy childhood as you possibly could. Too many parents sacrifice far less than you already have for their kids. You inspire me, and I am so sorry that you have to deal with everything you have to deal with. Thank you for this blog, and sending all the best for a safe and happy delivery later this summer.


    1. Hi Genie, thank you for your kind words and following along — it means the world to me! I often wonder if anyone is ever listening. I hope you and your beautiful family are doing well. Much love.


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