This summer I have several teen writers who will be sharing their perspective on living with O.I. The first post in this series comes from older sister H who has a younger sister with O.I. H is a busy high school student who will be going on a mission trip to Jamaica later this summer!
The first thing that should be made clear, is that what my four year old sister, E, has does not affect her cognitive ability what so ever. Not in the slightest bit, no matter if anyone tells you any different. She is an amazing, happy, smart, little girl. She has an amazing imagination and everyone who meets her loves her. She is my inspiration in staying strong. She can show the world that no matter what you can be strong.
That doesn’t really change the way strangers view her though. When we are walking in public and she is in a wheelchair with a broken arm and 2 broken legs (or whatever happens to be the break that month), many will make very mean assumptions or try to pretend they don’t notice. We do though. There is that off occasion when someone will be gutsy enough to come up to one of us and ask about her. We don’t always go into detail about her “special bones”, but when someone asks, we will tell them. I am usually pretty clear and straight to the point, but I also make it very clear that it does not affect her cognitive ability; in fact she is smarter than most four-year-olds I know. It is very common to find someone who will automatically assume that it affects her brain, it’s a very common misconception, and that’s okay. I don’t mind explaining E’s bones to people. It can sometimes be slightly awkward, but E can usually lighten up the mood with one of her many witty comments.
Like I mentioned before, I don’t mind explaining the way E’s bones are to people, but when people ask about how we found out, that’s when the waterworks start going. My mom is a very strong woman, and she didn’t want us to be too affected by what was going on. She wanted us to keep living our lives normally, so when it was all happening, I really didn’t have any idea. Now that I am older though, and I have heard more about it, I know what went down. My mom had taken E into the doctor because she was hurting, so they took an x-ray of her bones and found that she was broken in multiple places. As safety precautions, they took her into their custody and asked my mom a multitude of questions. And to make a very long, dragging story short, the CPS (Child Protective Services) got involved, we (the children) were questioned, different family members had to stay with us at all times, and finally, after a long number of months, they closed the case and we were told E has a very “interesting” form of OI. Telling people this story can sometimes get me going. What my parents went through was very unfair, but they were very strong and they kept us safe too.
My family and I don’t focus on those things though. My parents work hard on giving E the most normal life she can possibly have. There have, of course, been some bumps in the road along the way, but for the most part things at home have been good.We have just learned to live around her “special bones.” Some people feel bad for us, but there truly is no need for it. E, and the rest of us are as happy as can be.
Are you a teen who loves writing & has an opinion on living with O.I.? Be a guest writer this summer! Email me at oi.perfect@yahoo.com (or send a facebook message to facebook.com/oi.perfect) to find out more =)
Are you a teen who loves writing & has an opinion on living with O.I.? Be a guest writer this summer! Email me at oi.perfect@yahoo.com (or send a facebook message to facebook.com/oi.perfect) to find out more =)
Nice job H! This is wonderfully written :)
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