Remember that movie in 2009, My Sister's Keeper? There was line in that movie that struck a cord with me about parenting a child with special needs.
"What are you then if you aren't a momma b**ch fighting for her kid?"
(Maybe a spoiler alert? Can it be considered a spoiler after 4 years?) The mom's sister said these words to her about how much she'd lost herself to fighting for her kid. The daughter had cancer and was in remission but it returned and attacked the organs in her body causing her kidneys to fail. Since diagnosis, the mom drove the cab (dad said) on how they did it all; including genetic selection for the birth of their youngest child so she could be a donor for the sick sister with various cord, blood, plasma and bone marrow. The mom had quit her job and had what seemed like a life dedicated to only keeping her daughter alive, at a cost to her other children and her relationship with her husband and her relationship with herself. But the family was portrayed to be close knit and in tune with each other.
I'd be lost in my parenting role if I didn't have the other facets that make me who I am. I am fairly certain that I wouldn't be as an effective advocate, volunteer, friend to other kidney moms if I wasn't also a friend, business owner, wife, mom, volunteer outside of the special needs world.
Honestly, I don't know how people do it. I don't know how they handle the day in and day out of parenting sick kids without the comfort of the identity outside of that role. Being all of those other things allows me to be the kind of mom I am to my kids. Now I realize that parenting sick kids has the propensity to remove you from certain events and roles because of the unpredictability of The Life. But hanging on to facets allows one to slide in and out of the other roles when the situation allows.
I like to think I'm pretty decent at holding on to all the sides of my identity that make up the configuration of who I am. But it's an internal struggle and I have to fight to hang onto them, especially when the ebb and flow isn't ebbing and flowing in my family's - or my - favor. I will say that my role as the kids' mom has altered all of those other identity markers - wife, friend, daughter, sister, aunt, volunteer. Some in a better way, some not. But they are what make me who I am today.
And for today, that is enough. Momma Beotch and all.
Julia Roberts recently shut down her personal blog Kidneys and Eyes after 9 years and focuses all of her blogging time on a community she co-founded, Support for Special Needs. She loves long walks on the beach, Diet Coke, and naps. Married to Julian for nearly 20 years, they laugh at their life a lot.