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Welcome To My World

being sick osteogenesis imperfect

Being Sick and Having Osteogenesis Imperfecta

It's summertime, and you know what that means-everyone seems to be sick with that miserable upper respiratory cold that goes around without fail at this time every year. You know, the one you have tried desperately not to catch? The one where you tell yourself it's just a sore throat, and then before you know it, you're pretty sure you're dying from drowning in snot from the inside out? Yeah. That one.  Having Osteogenesis Imperfecta makes catching a simple cold a major problem for me. Because my rib cage didn't develo[...]

The French Quarter: A Love/Hate Relationship

One of the first questions I get when people find out I'm from New Orleans is "Don't you just love to hang out in the French Quarter? Do you do that every weekend?" My relationship with the Quarter is very much a love/hate one. I love the atmosphere of the Quarter. I love the fact that there is always live music to listen to no matter the time of day (or night) and I love the cast of characters just walking the streets. I love having my fortune told in Jackson Square and I love seeing all of the different artwork on displ[...]
child abuse

“Looking Up” Excerpt: Caged? Child Abuse?

Parents of children with Osteogenesis Imperfecta are often charged with child abuse, simply because their kids always turn up with broken bones. My muscles can break my bones when they contract, making it seem like my bones break at random. You can see where, especially if a child has a lower severity of OI, parents are blamed when the child shows up hurt at school and can’t say how they hurt themselves. Well, my parents have also been charged with child abuse, though for a slightly different reason… My parents ar[...]
wheelchair

The Process of Getting a New Wheelchair

Because I have Osteogenesis Imperfecta, or Brittle Bone Disease, it's extremely important that I use a wheelchair that is not only stable but supports my crooked body in all the right places so that I don't break a bone if I hit a bump. My body is not standard. I have bends in all the wrong places, so my seating system has to be completely custom to be comfortable and effective. I have to be physically able to reach the controls and push all the buttons. It's important that every detail of my chair is tailored to my need[...]
at a concert in a wheelchair

Concert Fun

Anyone who knows me knows that my idea of the perfect night involves being in the front row of a concert. I don't have a lot of hobbies besides painting (which usually feels more like work these days), but I absolutely LOVE listening to live music and attending my favorite artists' shows. Thanks to one of my aides and my aunt, I was introduced to country music at a very young age (much to my mother's dismay), and absolutely fell in love with it. That's not to say I don't like other types of music too, but I am definitely a c[...]
school inclusion, high school

The Importance of School Inclusion

Last year, I was given the opportunity to speak to a group of teachers about the benefits and importance of the inclusion of disabled kids in mainstream schools (school inclusion). By the time I was three years old, my parents started looking into pre-school options for me because I was driving them crazy! I was smart and curious, and I wanted everyone to bring me everywhere so that I could see EVERYTHING. I was bored all the time. I obviously needed something else to stimulate my brain, and my poor parents were exhausted.[...]
Lexie, Katherine's Service Dog

Meet Lexie, My Service Dog

Meet Lexie, my 7-ish year old sheltie/border collie mix and trained service dog. We rescued Lexie about five years ago from the Gulf Coast Sheltie Rescue in Pensacola. She had been found five months prior running on the interstate with a child's leash attached to her, had heartworms, and knew absolutely NO manners or obedience. Though we did not want a puppy, we basically got one in adult form. She barely even knew her name. Originally, I wanted to get Lexie into competitive dog agility. It turned out that Lexie was p[...]
on the beach

Why I Hate the Beach

Posted In: Welcome To My World
What is the first place you think of when you think of taking a summer vacation? I bet more than half of you instantly thought, THE BEACH of course! There's something about that beautiful blue water, the ocean waves, white sand, and sun that just lures people in. Kids love to run in the surf, build sandcastles and maybe throw a ball around while their parents love the relaxing sound of the ocean, a shady canopy, and maybe an adult beverage or two. Even the dog loves to play in the sand and the surf. There is something for ev[...]
depending on others

Depending on Others is Hard!

Posted In: Welcome To My World
Do you suddenly find yourself depending on others for basic necessities? It's hard, isn't it? When people meet me, they often say things like, "Wow, you break that easily? You're in pain all the time? That must be so hard. I can't even imagine that." The truth is, yes, there are days where it can be difficult just to breathe and the pain factor really sucks, but most of the time I have an underlying pain that I've adapted to over the years. Sometimes physical pain makes it hard to be me, but doesn't everyone have somet[...]
wheelchair

Lessons in Wheelchair Etiquette

First and foremost, don't assume someone in a wheelchair has a mental disability. Like me, there are many, MANY people in wheelchairs who are completely aware of what is going on around them and chances are they understand exactly what you are saying about them even if they are physically unable to respond.  Most people in wheelchairs are not deaf. I don't know why, but a lot of strangers have this innate need to speak loudly and slowly to me when they first meet me. It's true that I do have a little hearing loss, bu[...]