Thursday, April 1, 2010

Our Little Angel (one of three!)

I love all my kids with a fierceness! But i jsut wanted to focus on Kylah today. Two days ago I had this forceful desire to look up her conditions on the internet. As most of you know Kylah was diagnosed with Schizencephaly and Septo Optic Dysplasia when she was bout 9 months old. What this means is that she has a hole in her brain, and also her optic nerves dont function right and she could stop producing hormones anytime. Because of the hole she has low muscle tone and almost no control over her left arm/hands and a weak and slighly shorter left leg, it's hemiplegia/hemiparesis. Also she has seizures. Because of the funky optic nerves she has low vision and her eyes are always moving. Theses are a few things tht she has to dal with. But don't feel sorry for her, she's as smart as a whip! and has unmatched memorization skills! She is just the sweetest little gal. She is 6 and all her life we have just dealt with her conditions within our family and medical support. But she is getting older and wiser and well, i worry. She asked me the other night why her arm doesn't work like the other kids. I sat there and had to tell her that it's because it's her special arm. I told her that she is a child of God and that He knows and loves her and Heavenly Father gave her that arm because He knew she was strong and brave and smart and He needs her to teach that arm how to do things. She has to be the teacher (a thought that she loved) and help it learn to do things like her other arm. I kept reiterating that it was "special". So when I was done she said "So, the other kids' arms aren't special, only mine , right?" She is super smart but because of her vision she reads (which she is learning) and writes slowly and just sometime has a difficulty. She told me that this one little boy tells her she isn't smart (I do't nesecarily think it was personal but he is in a higher reading group and just a little stinker all around). Now I could freak out and call her teacher and rant and rave but, honestly, what am i teaching her if i do that? That she isn't smart, that i will always fix her problems, that she doesn't need self confidence! I must admit that at first I did want to call the teacher. So now when she comes home and says that i don't make a big deal. I just say, Kylah, are you smart? Do i think you are smart? Does your teacher think you are doing great? Does Heavenly Father think you aren't smart? Do you care what he says? He's just teasing and trying to make you mad. Since everyone that's important thinks you are fantasticly smart, should we pay attention to what he says? I want her to get used to automatically thinking she's great because kids are cruel. it's the same thing with her eye movement. when people say what's wrong with erh eyes- and yes people are that tactless- i just say matter of factly "Nothing. They are just different that yours." I don't ever want her to think that something is wrong with her, it's not! I make it such a priority to teach my kids that everyone is different and that it's okay to be different. I teach them that it doesn't matter what people wear, look like, if they are in a wheelchair, if they use a dog to walk,.... it's okay. People arent the same. I am the only one with blue eyes, so i use that as an example that everyone's eyes are different. My husband's skin is darker, everyone is different. She asked me last month "why did you marry someone with black skin?" (ha ha she meant dark) i said because i love him. but his skin is dark, why did you marry him? Becasue it doesn't matter what people look like if we love them. If you are reading this please teach your kids to be tolerant. It's okay to ask about peoples "disabilities" but don't be rude about it. I am not ashamed of my daughters problems, and i don't want her to be. I want her to be proud of who she is. I don't want her to feel sorry for herself. She can be just as smart, fast, funny, sweet, happy, confident, good at sports, as any other kid as long as she workd hard and beleives in herself! Help those around you beleive that too! Help all kids believe in themselves!
Lets give props to Whitney Houston (the pre-drug whitney houston)I beleive that children are our future. Teach them well and let them lead the way. Show them all the beauty they possess inside. Give them a sense of pride, to make it easier....

Thanks for your love and support!!!!

P.S. I just was about to publish this and Maddox just looked at me and said "you have a circle head"

1 comment:

  1. Thank you for writing this! What a beautiful post about a beautiful little girl. I can't wait to hear more about her. In Skyler's case he is missing most of his pituitary gland, that's why he needs hormone replacement therapy every day. He will also need growth hormone when he reaches two years old which is a shot every day except Sunday just to give him a break from the shots. I'm not sure if you read from the post where we found out Skyler had Septo Optic Dysplasia, but I will make a link to it on the side of my blog so you can find it. I would love to hear more about Kylah and her story. I also know of one other blogger with a daughter with SOD, there is a link to his blog on my side bar it's called "Thoughts From The Bench" would it be alright if I linked to your blog as well?