This meme keeps popping up in my newsfeed. The first time I read it quickly and passed by it, it was not the right time. Then, of course, like a wildfire, it began to get copied and pasted by so many parents of CDKL5 kiddos and parents of children with medical complexities, so it popped up more and more. Each time it emerged I couldn't stop myself from reading it, so each time my eyes would become watery and I would again move off the image. I knew I wanted to save the image for when I was ready to address the words I kept reading, so eventually, I right-clicked it and pressed "save image", and now approximately a week after the first time I saw it, here I am.
"You're really advocating for someone's quality of life. That's the moment you realize that you won't give up"
These two sentences take the air out of my lungs. Maybe they hit home because of what is going on currently, maybe it would have knocked the wind out of me regardless of where we were on this journey had it appeared at another time in my newsfeed? But all I think after I read the last sentence is, "what is giving up? what does giving up look like, how are those words even part of this picture?" Advocating for someone's quality life is no small feat. It looks vastly different for every single person who has to do it. Advocating on someone's behalf is scary and unknown and when it comes to "quality of life" I feel like the answers are blurry, but the giving up part does not present itself as a single moment when it becomes "more than accommodations". If you are advocating on behalf of a person there shouldn't be an epiphany where you suddenly realize "that you won't give up", because advocating in and of itself means you are going to represent what is best for that person until you are red in the face and no one has any doubts that you aren't backing down until this person's needs are met.
Yet, the weight that is placed on those of us who are responsible for advocating for a person's quality of life is unexplainable. It often brings with itself the inner feeling of wondering if a choice will be considered to be "giving up". When it comes to "quality of life" in a medically complex child, who is to say what "giving up" looks like? If the choice you choose on behalf of "quality of life" results in a potentially shorter life is that giving up? Is it "giving up" if you no longer choose to keep seeking treatments? If the main goal is "quality of life", then I feel like the words "giving up" should never even enter into our minds, because it has to be known that there is no such thing as "giving up".