Lupus Through the Eyes of My 2-Year-Old
Like most moms, I have felt guilty as a parent. I worry and second guess myself too frequently. Did I make the right decision? Am I a good mom for doing this or not doing that? I know these questions are not helpful, but they are hard to stop asking.
Having lupus as a mom
Having lupus only adds to my concerns. Is my disease negatively affecting my child? Will I have the physical ability to care for him? Will he remember me as the mom who was always in bed? My fears go on and on.
But children are resilient. Though I’ve struggled with guilt trips since my first trimester of pregnancy, my son has thrived throughout his first 2 years of life. I’ve reflected, watching my healthy and happy child, and realized he would probably tell me we’re doing just fine. While he doesn’t talk much yet, this is what I think he would say.
My 2-year-old's view
My Mom and I have a lot of fun. Some days we do everything together – chase each other, make funny sounds, throw balls, and even do chores together. She has to work extra hard to take me to parks and playdates, but it’s so worth it.
Sometimes my Mom is really tired. When she needs to rest, I just bring my toys right over to her. You might be surprised how many games can be played on the couch.
When her hands or knees hurt, I usually take charge of the puzzle, book, or whatever toy we’re playing with. I am learning to turn pages, and Mom can read over my shoulder. We learn to adapt and do things differently when she’s not capable.
I get to spend a lot of time with my grandparents while Mom rests. It’s good for her to take breaks, and I have so much fun at their house. I even have my own ride-on scooter. I am being raised by many people that love me. They tell me it takes a village.
On the weekends it's mostly Dad time. I really like Dad time. My Mom will join sometimes, but when she needs to stay home that's okay. I like when it's just the two of us – especially when Dad lets me eat Pop-Tarts.
My Mom’s lupus shows up every day in our life. She talks about it and doesn’t hide things from me. I am growing up learning about her disease as we go. Some of it is hard but it teaches me how to deal with hard things.
The only thing I really don't like is that I'm not allowed to play with her cool pill bottles. What's that about?
I like that I can brighten her day when it’s hard. I might do a little dance, bring her my beloved penguin, or spin in circles to make her happier.
There have been many stages of my life that were tough. Right now I'm entering this thing called the terrible twos and I have a lot of big feelings that I don't know how to express. I can get really cranky and demanding, but I always find a way to let my Mom know that I really do love her.
Her lupus teaches me patience and empathy. My enthusiasm for life encourages her to keep going and do her best every day. And when her best is playing from the couch, I’m still grateful to have her.
I hope that we continue to inspire and teach one another with every year that passes. We both have a lot of growing to do.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?