Friday, May 8, 2015
Schizencephaly Awareness 2015
Tuesday, May 5, 2015
When "well meaning" words hurt
There is a very good reason I raise awareness and encourage my friends and family to learn about Jaylyn's diagnoses. Those reasons include avoiding conflict, better understanding of Jaylyn, and selfishly, to spare me some anticipated pain when those "well meaning" comments come out of someones mouth. Its almost unavoidable and mostly expected from strangers who may not know or understand. But for those that do know, or at least have some idea of what we go through on a daily basis, its downright painful. Between updating family on social media, running an awareness page and sharing Jaylyn's progress, I would hope to be spared at least some pain. Yet it still seems as though some have no idea whatsoever. Or perhaps, they dont want to know. I sometimes wish I didnt. The grasp on reality, my medical background, and thirst for answers is a blessing and a curse. I do share quite a bit, however, every single detail of our lives is not broadcast on social media, and even if it were, I still think it would be hard for anyone to have a really good understanding of what we go through and grasp why I grieve. There are so many things that people complain about their children doing, that I yearn to see Jaylyn do. I wont say that Im envious, or that they even take those things for granted, because I raised 2 typical children and had those same complaints at one time as well. But I would love to hear Jaylyn say, well, anything really! I would love to walk in from work and have her run up to me, wrap both her arms around me, and her tell me that she loves and misses me. But due to her diagnoses, that is never going to happen and I have to love whats missing. I am pleased with her progress, although we have had some recent set backs. Her recent grasp on sign language is encouraging and we will be working on a picture exchange system as well. I dont just write these blogs, make awareness videos and run an awareness page for me. I do this for those that want to know Jaylyn. Want to understand her diagnoses, and perhaps maybe even understand where Im coming from and why I get upset with "well meaning" comments about her running around or talking my ear off. She is classified as NON VERBAL and NON AMBULATORY. Which means she cannot talk or walk. Will she? Not in the way you or I do. Not like a typical child. Her PT has even made a recommendation for an adaptive "stroller" aka a wheelchair. So when I am outside working with her and I look at you like I want to punch you in the face for making jokes about Jaylyn running around, perhaps you understand why.
