Advocating for My Daughter With a Disability Isn't 'Selfish'
I’ve been told sometimes I need to remember that our family is not the “center of the universe.” This is typically in regards to discussions about support, adaptation, and our explanations of why we do things a certain way with my daughter Callie, who is a lower limb amputee with a chronic heart condition. I have to give those people grace, though, because they are blessed to not to have to worry about the things our family does. In this case, ignorance truly is bliss. They don’t have any insight into our life — the struggles, the daily adaptations, the foresight and planning we have to do, the financial blows or the emotional challenges we face.
I can understand why it might be easy for other families to see my request to hold sleepovers at our house as selfish or uncompromising. It probably doesn’t enter their mind that it might be hard for Callie to navigate a strange house at night without her leg on. They don’t know how to put on her prosthetic leg or what to do if she has phantom pains in her leg in the middle of the night. They probably aren’t aware my daughter will have to spend her entire life adapting to a world that’s not built for her. And for the rest of my life, I will have to work my hardest to blaze trails for her, make life more accessible for her, and do everything I can to make sure she is able to shatter glass ceilings that have been put on her by society. It also probably won’t enter their minds that I’ve spent the last 11 years getting up in the middle of the night to check to see if she’s still breathing.
I can understand why it might seem like we are avoiding get-togethers or parties, but many people don’t realize invites to trampoline parks, swim parties, water parks or bike rodeos are not easy for us to navigate. It puts an extra layer of strain on the parent that goes with Callie to the event. Places like those tend to remind Callie that she is different and add extra physical challenges for her. Some aren’t even adequately constructed for people like Callie who have a physical difference or mobility issues.
Sometimes when we do go to places like those, we have to deal with stares, side eyes and blatant gaping at Callie. But the people who invite us often don’t think about these things, because they haven’t had to hold their child’s hand as they cried and asked why the other kids were staring at them.
I can understand why it might seem like I sometimes ask for a lot of support and accommodations. But sometimes I just need someone to come help, to remind me that we have people supporting us and it’s going to be OK. With my type I diabetes, I make between 300-400 extra decisions a day to stay alive compared to a healthy person. If we are doing math (which I hate), compound that with the role of caregiver to a medically complex child. It might not enter their minds the sheer extent of the appointments, leg adjustments and builds, surgeries, rehab, physical therapy, occupational therapy, advocating and day-to-day management both of our conditions take. And that someone who is always looked at as the “strong one” might need to be supported too.
So I try to remember that as much as our family is the center of my universe, not everyone has a clear understanding of what our little supernova life looks like. The mountains we face daily, the heavy loads we sometimes carry, and the asks we do have might look like being selfish to people on the outside looking in. And I’m all right with that.
My favorite author, Rachel Hollis, says “Other people’s opinions are none of my business.” And I wholeheartedly feel the same, because I won’t ever stop advocating for our little girl. I won’t ever stop making sure she is surrounded by people who love her and want to help make sure she has the best life possible. I won’t ever stop asking for help — for my mental stability as well as for Callie. I won’t apologize for protecting our peace. I won’t apologize for how we raise Callie or what works for our little family of three. I also won’t ever stop giving those people that see us as selfish some grace. Because they are so very blessed.