I’ve been told sometimes I need to remember that our family is not the “center of the universe”.
This normally is in regards to discussions about support, adaptation, and our explanations of why we do things a certain way with Callie.
I have to give those people grace though. Because they are blessed to not to have to worry about the things that 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 burden that we carry.
So I can understand why it might be easy for them to see my request to hold sleepovers at our house as selfish or uncompromising. Because it won’t even enter their mind that it might be hard for Callie to navigate a strange house at night without her leg on. It won’t enter their mind that 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. It won’t enter their minds that my daughter will have to spend her entire life adapting to a world that’s not built for her. It won’t enter their minds that means 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. Because it won’t even enter their mind that invites to trampoline parks, swim parties, water parks or bike rodeos are not easy for us to navigate. It won’t enter their mind that it puts an extra layer of strain on the parent that goes with Callie to the event. It won’t enter their mind that places like those reinforce the fact for Callie that she is different and adds extra physical challenges for her. It won’t even enter their minds that some of those places aren’t even adequately constructed for people like Callie who have a physical difference or mobility issues. It won’t enter their minds that sometimes when we do go to places like those, we have to deal with stares, side eyes, and blatant gaping at Callie. It won’t enter their minds 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. Because it won’t even enter their mind the emotional toil that it takes on our family. It won’t enter their minds that sometimes I just need someone to come help, to remind me that we have people that support us, and that it’s going to be okay. It won’t enter their minds that with my Type One Diabetes I make between 300-400 extra decisions a day to stay alive compared to a normal healthy person. If we are doing math (which I hate), compound that with the role of caregiver to a medically complex child. It won’t enter their minds that someone that always is looked at as the “strong one” might need to be supported too. 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 that both of our conditions take.
So, I try to remember that as much as our family is the center of MY universe, that not everyone has a clear understanding of what our little super nova life looks like. What mountains we face daily, what heavy loads we sometimes carry, and what asks we do have—those might look like being selfish to people on the outside looking in.
And I’m alright with that. My very 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 that she is surrounded by people that 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 very very blessed…..