Awareness Everyday

Awareness Everyday

As someone born with Cerebral Palsy, I am still learning how that affects me, how to navigate and advocate for my own and other’s needs. I am still learning how to be compassionate and kind to this body that didn’t ask for CP. Even as an adult, I am still learning…

I was born in a time where advocacy looked different than it does now. I am grateful for the life-changing ways that I was and am still supported. I am also acutely aware that I want to advocate and encourage those who are CP warriors in this current time, a different world than I grew up in. 

I am so proud to be a part of this brave, life-changing community. I am a part of it through the Cerebral Palsy Foundation, as well as advocating and educating in my own community, normalizing that we all battle something. It was only a few years ago that I started to become more aware of how many resources have been developed and built upon to support myself and others with CP. 

As part of that, I have purchased the “Go green for CP” t-shirt for the last 3 years to wear on March 25. As I sat next to hubby in the car that way this year, trying to angle my camera to both highlight my t-shirt and hide my own personal “flaws,” I mentioned that we should, as a family of 5, all get a t-shirt next year. He said something to me that caught my attention.

“Stace, I love that today is about raising awareness, support is highlighted and you all are celebrated. I love days that bring greater awareness to us all. That is all so good.  And all of you, (those with CP) and all of us (family, partners, caregivers,) are always aware of what life is like with CP.” He said it with empathy, awareness and the understanding of my life experiences as well as his own, as someone who is married to someone with CP. 

Isn’t it so true? At any given moment, we must have so much intentional awareness of possible difficulties, obstacles, potential ableism and successes. This is also true for those who love, care for and assist a loved one with CP.  I’ve talked with so many parents of kids with CP who know that awareness is so important. It is also exceedingly hard to always be “on.” 

I began thinking about this in regards to CP Awareness Day a bit differently. If we think about even the name, Cerebral Palsy Awareness, there are so many things I imagine you would like others to be aware of, as caregivers and Cerebral Palsy warriors. What does awareness mean to each of us, personally?

Maybe it is awareness about both being like everyone else, (with your thoughts, feelings and dreams,) and having a body that functions differently than someone without CP. Perhaps you’d like people to be aware of what life is like using assistive devices, and that, again, you are more similar than you are different…

If you are a tireless warrior caregiver, what would you like others to be more aware of on your journey? Perhaps it is both your passionate advocacy and the never-ending exhaustion that is required in your situation. Perhaps it is a scream of pride at the way your person perseveres and a scream of frustration that you again must navigate difficult systems to receive services. 

Yes, the life we lead with CP and caregiving is deserving of more awareness, every day and there is profound awareness required to live this life is every day. 

So, how do we both engage and advocate and at the same time, allow ourselves to rest and “just be?” First, this will be different for each and every person. We can’t be on constant alert to advocate and yet, the world presents so many opportunities in both positive and negative ways. If that is getting bullied because people fear what they don’t understand or having a new student in school ask what is it like having CP. We get to choose if we have the energy and/or drive to explain it in that given moment. We may in another moment, get asked a similar question and find ourselves with the energy to explain and normalize it. I think this is important, yet difficult to take in.

From children to adults, caregivers alike, CP is the most common lifelong disability. I often tell clients going through loss that “this is a marathon, not a sprint.” My husband reminded me that awareness is so, so important every day, not just on the ones that are designated for us. He reminded me that we don’t really get “a break,” from CP, so that makes it more important that we take care of each other and ourselves as we manage all the aspects of CP.

Let’s be thankful for increased support, research and awareness. (Thank you, CPF!) Let’s cheer each other on, always. And let’s honor just being human. Our identities are made up of so many pieces and parts. And while CP is an important one, it is not the only one. Allow yourself to be ALL that makes you, you every day. That is what the world truly needs from each one of us. Awareness and acceptance that abounds across all that would make us “different.”