it is what it is
I really just need to get something out there for everyone, because sometimes i feel like people don't know how to approach me or interact with Sophia sometimes , so they just don't try out of fear of offending us.........Sophia is different AND I want her treated that way....gasp! did she say she WANTS Sophia treated as if she were different?That's exactly right.....My child IS different . If I am going to have to accept that, then so should the rest of the world. I really just want to get this out there. My childs illness DOES define her. it really just does. Me or anyone else trying to pretend that it doesn't is just foolishness. She is a very rare child with a very rare illness that NOONE know what to do with. So below ive assembled a list to help out anyone who might be confused about what her illness really means for us. I hope it helps everyone feel a little better informed. She has : Ponto- Cerabellar-Hypo-Plasia (Ponto-Sara-Bellar Hype-o-plAsia) is how you pronounce itIT IS:Rare- so its ok if you haven't ever heard of itSpontaneous- it just happened, we didn't pass it to her,Genetic- meaning it wont ever go away, its written on her DNA that she is this wayOK to ask- If you have a question or are curious to know something about Sophia or her issues ASK! Taking care of her is all I do and I love the opportunity to talk about it I wont cry, promise.It Is NOT:Contagious: she couldn't wish it one her worst enemy, even if she wanted to......Treatable: not in the traditional sense. There is no pill, no shot, no surgery to make this right.The end of our world: Its definitely a new world for us, but not the end of it..Also i would like to note :She is in there.... I don't know if maybe people assume she's a vegetable inside.. but my daughter is just as much a person as your child is. She talks in her own way, she laughs, she crys, shes ticklish, she has favorite shows and sleeping positions just like any other small child. She gets frustrated and proud of herself just like other kids. It just takes a little more effort on our part to be able to notice and pay attention to her enough to know what each little face or action means. But please know shes in there. We are fighting everyday to help her learn how to better communicate her needs. She may never communicate in a traditional way. but i have nothing but faith that someday i will hear her say " mommy , i love you..." but until that day comes im worried about how the world is going to start to react to her, now that shes getting big enough to not be a "baby" anymore. people understand a baby not looking at them and not talking... Now that shes not a baby... I am CONSTANTLY confronted with awkward social situations were a well meaning stranger just doesn't know how to ask me whats going on with her . I don't know why it hurts so much for me when they don't ask.. I really enjoy being able to share our story. spreading awareness is like my second job.So earlier when i said i want Sophia treated different i didn't mean i felt entitled to specialized services or opportunities because she has health issues,i ment that i want you all to take the time to teach your kids that different is ok. teach YOURSELF that different is ok, it doesn't makes her more or less then anyone else, just different. I REFUSE to raise my child under some pretense that shes a typical kid who happened to be different. She is rare and i will always make sure she knows how treasured all rare things are. ALL OF THEM. I don't know why ... but i have noticed since i have had Sophia that people really don't know what to do when your OK being different. when you don't want to be a victim.. no one knows how to react to you....people expect overwhelmed moms to snap when they ask " what's her diagnosis" but i can assure you they would rather the chance to inform you then endure your staring out of honest curiosity. I just wish i knew what happened to human compassion and open communication. The world has become so PC that even good people are afraid to be kind or curious. My hope is that somehow we can all learn COMPASSION again...but hopefully i can change that, one heart at a time.... i really just wonder when did different become synonymous with less? and i pose you this question..what are you going to do to help your kids see that just because someone is different, doesn't mean they are wrong or less? The next generation of adults is depending on YOU to teach them right from wrong. take that opportunity and teach them correctly. Don't let your kid be the obnoxious punk on the playground.....( god forbid i ever catch some bad ass kid fucking with my daughter, that's all im going to say)Sophia friends see her as one of them ! Never forget hate is a learned behavior ,
