I really didnt get online yesterday so there was no 1st day of Awareness Month from me. God alone knows what Ill be moved to share with you all about Prader-Willi Syndrome during this month of awareness. I do encourage all of my friends and family to do a google search to learn just a little bit of what my son, and others sharing his diagnosis, go through. And I may end up sharing some things along the way of what parents and siblings go through. But I want to start POSITIVE! Before learning that my son had Prader-Willi I led a different life. I had never heard of this syndrome. The idea that families would place locks on their cabinets and refrigerators or that they would micro manage calories in their sleep, seemed inhumane and cruel. Now I dont even bat an eye at such precautions, because now I know these measures are just that...life saving precautions. Getting the diagnosis ... hearing that my son was missing important information from his chromosomes ... I felt like I was missing something. I was missing the joy of raising a normal child.... living a normal life. It wasnt fair. But I gained something. I gained community - a group of people scattered across the globe that I have never met and probably will never met, but they know me better than most every other person in my life. They GET IT! They understand it. They dont question me. They dont think I can teach it away. Or punish it away. Or pray it away. They get it because they deal with it every day as well. No one else will ever truly understand how I felt when I heard the diagnosis. No one else will ever truly understand how sick and crushed I felt when I had to place locks on my cabinets and fridge. No one else will ever understand just how much my heart breaks when other people are cruel to my child, whether its intentional harm or careless words made out of ignorance. My community knows and understands. They dont pity me or my son. They just love and accept us as we are because we all share the same walk in life. I learned tolerance. In the past I would get upset or angry or feel put out having to deal with differences in the world. Someone driving too slow. Some kid having a meltdown in the store while the mother either looked helpless or seemed to be unaware of their childs meltdown. I was the mom that made treats for every holiday and sent them to my kids class without a thought of restricted diets or allergies and occasionally feeling put out about that ONE kid that ruined the occasion for every one else. I too thought Its only one cupcake. Its only one day. What difference does it make for a special occasion? Once I became the mother of that ONE kid I knew how one cupcake could make a difference... that one day could make a difference. I learned that keeping my child home to avoid ruining the fun for his classmates meant a break in routine for my child that threw him off for weeks. That every break in his diet meant careful planning and trimming and changing (again breaking routine) of my childs menu for weeks or months. And I learned acceptance. I learned to accept the differences in my child and to actually celebrate them. I learned to accept the differences in others as well. I also had to learn to accept that there are people in the world, living their normal lives, with their normal children, who would never understand and that would pass judgement on our lifestyle. I learned to accept that people will say mean and hurtful things, most often because they just dont know better and dont even realize theyve said or done something hurtful. Its life. And its beautiful. Imperfections and all.
Posted on: Fri, 02 May 2014 05:41:42 +0000
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