I honestly don't know how to start this off, but I'm just going to try my best and just be honest. If anyone would have told my parents on the day I was born that I would have muscular dystrophy at 17 they probably would have laughed at them.
I was born on June 15, 1983, three weeks before I was suppose to be. I was a preemie and spent the first days of my life on my own private beach, as my grandpa has always said. I was in an incubator with shades on my eyes so he always said it was like I was laying out on my own private beach. I was a fighter though and that still holds true to this day. Growing up I hit all my milestones on time, rolled over when I should have, sat up when I should have, crawled when I should have and walked when I should have. There was nothing out of the ordinary. Growing up was the same way. I had an average childhood. I did all the things kids should do. I ran around, I climbed on anything I could fined, I played sports, I beat my kid brother up, I played in the dirt, I drove my parents crazy, everything I should be doing. Then I started school. Oh how things can change in an instant.
Elementary wasn't quite as hard as Junior High and High School, but it wasn't a cake walk either. I'm pretty sure I was a target from the time I hit the door of my kindergarten classroom. I'm not ashamed to say that I was still peeing my pants at that time. There is a reason for it, but we didn't know it at the time. Kids were so mean and cruel. I had things written about me in the bathroom stalls in ELEMENTARY school. How do kids know how to do that at such a young age? It got to the point where I brought a pocket knife to school to try to scratch out what was written. Teachers hated me too. I still can't figure that one out to this day. I remember getting hurt on the playground one day and was walking to the clinic when I came across one of the second grade teachers. I think I was probably in about third or fourth grade at this time. She saw me and asked me if I was hurt real bad. I said no it wasn't that bad, and you'll probably be as shocked as I was when you hear what she said: "Well that's too bad that your not hurt to the point of dying, cause I had my shovel in my trunk and I could have buried you." Who says that do a child?! I was locked in a tiny closet like room by myself for sitting on my leg at the lunch table. I had a substitute teacher threaten to throw a desk at me, which scared me so bad I went onto the playground and purposely peed my pants just so I could call my mom. Needless to say mom was furious. Anytime my mom or I tried to say something a blind eye was just turned. As if I didn't have it hard enough being picked on by kids, I had to deal with it from the teachers too.
Then came Junior High school. Worst two years of my life. Where do I even start? It was bad enough having all my classmates from elementary school still remember my accidents and carrying that over to Junior High. Then came the new thing to pick on me for. There was something just a little off about the way I walked. I kind of limped a little. So you can only imagine what that brought on. I had kids follow me around mocking the way I walked. If the pictures of dead fish saying quote "This is what you smell like" taped to my locker weren't enough, I had to deal with my walk. My mom immediately took me to the doctor to try to figure out what was wrong. They told me I was knock kneed and pigeon toed and would eventually out grow it. Ha were they ever wrong. I remember sitting in gym class one day just minding my own business when someone beamed a basketball at my head. The next thing I know I'm in the principal's office being threatened to be suspended. I was the victim and they were trying to suspend me. What the hell? Then there was eighth grade picture day. I'm all dressed up in my favorite dress and I get my period. Needless to say the back of my dress was a mess. That brought on a whole new batch of bullying. I was terrified to start High School. You can imagine why. As if that wasn't bad enough, then came the summer in between my eight grade and freshmen year. I finally thought I was free for a few months. Boy was I wrong. I played softball on a team outside of school. But so did a lot of the girls I went to school with. They even bullied me on the field. Then the worst day of my life came. Even though I never saw it because my parents cleaned it up before I woke up, there was a spot that was missed. It was lovingly pointed out by a sibling which is still kind of hard to forgive to this day. After a lot of nagging as to what the mystery junk was in our front yard, I thought it was puke, my parents finally broke down and told me what had happened. Someone, which I now know who and have forgiven, but will NEVER forget, had taken shaving cream and sprayed the word fish across my front yard, smeared tuna fish and sardines across my front walk, the tuna fish was the "puke", took used tampoons and put all over the yard, and stuck Kotex maxi pads on my front door. Needless to say I cried for days and was even more terrified to start High School. As much as I wanted it to, summer couldn't last forever. High School had to start.
Not a good four years. Not as bad as Junior High but pretty damn close. I was still getting picked on for the way I walked. My mom continued to take me to the doctor still trying to figure out what was wrong. Even after trying to talk to the principal about one student who was following me around daily mocking the way I walked, still nothing could be done about the bullying. One principal in particular told me to take a video camera, tape myself walking down the sidewalk, watch the tape back, correct my own problem and kids would stop picking on me. I was beat up on a daily basis, I was pushed into lockers walking down the hallway I don't know how many times, I had my fingers smashed in the windows of the school bus, I was threatened, mocked, and anything else mean you can think of. Thank god for being able to graduate half a year early. I still got to experience being a senior but got 5 months less of bullying.
So after a lot of begging and pleading they finally agreed to send me to an orthopedic surgeon. There I was told I had a disease called Coxa Valga. It was a misalignment of my hips with my femur bones. I HATED school more than anything but I didn't want to give up what it felt like to walk through the halls and say I was a senior. To fix that problem they were going to break both my hips and realign them with the femur bones. It would have take two years of rehab for recovery. I wanted a second opinion. After finding the right doctor it was a simple blood test that showed I had Limb Girdle Muscular Dystrophy. It was the worst, most devastating day of my life. I was so shocked, scared, angry, and depressed. I didn't know how to deal with this. I finally had an answer as to why I walked the way I did and why I was still having the accidents in elementary school. Seeing as how my bladder was a muscle it was weak. How could I have M.D. though? I was playing softball, climbing monkey bars, doing chin ups in gym, running with the dream of doing a 5K someday, colorguard, bowling on a league, doing flips on the bars of the playgrounds. This was suppose to be a genetic disease too. How could that be seeing as how NO one else in my family had this disease? How come I did? Why me? What had I ever done to deserve this? Did God hate me? Why was everything ripped out from underneath me with just one phone call? My whole world was crumbling around me. I had to be strong though. I had to be tough to keep my family from falling apart too.
I had a lot to learn about what was to come. This disease is a deterioration of the muscles. What was going to happen? Was I going to lose my mobility in my arms? Was I going to end up in a wheel chair? If so how long did I have before I was bound to a wheel chair? I tried to put on a brave face for everyone and say it was all going to be okay, but I was dying on the inside. I still try to be this positive, brave, nothings going to get me down kind of girl. But damn it gets so hard sometimes. It's hard to hold back the tears every time I pass a baseball field, It's hard to watch the 5K runners every year at the Englewood Fine Arts parade. I would give my soul to be able to have that all back. But I'm never going to get it back. I had stayed the same strength wise for 5 years. Then I had a beautiful wonderful baby boy and for the first time my strength got weaker. Lifting a little one all the time made it worse. That is the one thing I will never regret though. My son means the world to me and I honestly think I would die if he wasn't in my life. When I have my bad days, he's the only thing that keeps me going and gets me to get out of bed everyday. I'm not going to lie, taking care of him hasn't been the easiest thing on me. Chasing around a toddler is enough to wear out a perfectly healthy parent, but is really tiring to someone who is already 20% more tired than the average person because I have to put all the extra effort just into walking. I just wish the world was a little bit friendlier to handicap people.
That's been the second hardest part of having this disease. Being young and having a handicap placard for your car gets you a LOT of dirty looks from people. I try to brush it off and ignore it, but sometimes I just want to stand on a podium every time I get out of my car and shout to everyone that I have M.D. If only I could do that.
The third hardest part now a days is the lose of mobility in my arms and legs. I use to be able to keep my house sparkling, but now it's not so easy. I can't reach a lot of the things in my house that need to be dusted, I can't vacuum the carpet anymore, and every day gets harder to bend over and pick up my son's toys. I want to rip up all my carpet and get hardwood floors because I can use a swiffer sweeper better than a vacuum, I would love to have leather furniture so the allergens and bacteria in our cloth ones wouldn't be so hard on me, and it makes it A LOT easier to clean when your toddler spills something on it. If only I could afford a maid and have the money to make all the modifications. But I can't so I make due with what I have and just try to find the best way to modify with what I have. Right now though I'm focused on getting a hot tub to help with the pain. They say warm water therapy is the best thing for me. I can't even reach the bottom shelf of my kitchen cabinets anymore. I have to use a lot of straws in my drinks because I can't get my arm up high enough to tip the cup back. I've tried to get help to get modifications done to my home to help me, but I have yet to find a group or organization that is willing to help. The Muscular Dystrophy Association totally blew me off. Even after I have raised hundreds of dollars for them by selling shamrocks, getting "locked up", donating to the telethon every year. I understand a lot of the money goes to research, but what about helping the M.D. patients that are out there now struggling to get the mobility they need? Shouldn't some of that money go to helping us? Right now I'm fighting to get the assistance I need to get an island put in my kitchen to put my dishes and glasses down low. I understand them maybe not being able to help with that, but what was so expensive about helping me get a grab bar in my shower? No they wouldn't even do that. So if anyone from the MDA is reading this, I just want to give a big THANK YOU FOR NOTHING shout out to them.
All the anger aside, I can't let this stupid disease take over my life. I'm sure there are things I have brought upon myself that have made me a bit worse. Skydiving, the skyflyer, where they hoist you 153 feet in the air and drop you, my addiction to roller coasters, playing with my son, and just everyday life and living it. I have to do the things I want to do now before there comes a day when I can't. I still want to skydive one more time, I want to take a hot air balloon ride, I want to travel to Italy and see where my husbands grandparents spent half of their lives, travel to Singapore to see my dad since he has no job and I don't know when the next time I'll see him is, do the slingshot ride at our local theme park, coach my son's baseball team, do some home remodeling before I'm too weak to. I have a bucket list started and I want to finish it before I can't. I'm not upset about it, I'm just more determined than ever to achieve it all. I can't let it get me down anymore. Not saying I don't have my bad days where I just hurt so bad and cry all day. Because I'd be lying if I said I didn't have bad days. Someone once told me "Don't judge the outside, because the hero you are looking for may be on the inside." Those words have changed my life lately. It's given me the strength to go on knowing that someone thinks I'm a hero.
I'm able to go on everyday because I try not to look at myself as disabled, I'm just Beautifully Broken! I've even started an online store where I make clothing and accessories that read: "I'm Beautifully Broken and I don't mind if you know it." on the front, and "I'm Beautifully Broke and I don't care if I show it, because my Muscular Dystrophy makes me this way." on the back. I've also got a whole list of diseases that can go on in the place of muscular dystrophy. I just want everyone who is a bit different to not feel like a freak. To feel good about themselves, to feel strong, to feel like they can keep going and never give up. If I can just change one life it would mean more to me than anything. So here's to living my life and not letting my M.D. take control of it.
I would like to add one last note here. I need to say a HUGE THANK YOU to my mom, dad, step dad, brother, husband, grandma and grandpa for all the love and support they've given me through out my life. I don't know how I would have made it through my school years with out my mom. She was there for me every night when I came home from school bawling wondering how I was going to face it again the next day. She sacrificed so much for me to have the things I needed. Her poor little house needs some major work done to it, but she's always put that aside to help me with anything I needed. She's always put me before herself and I can't say how much I admire her for that. She was a single parent for so many years living pay check to pay check but never let her kids down. I can only hope that I can be that same way to my son. Thank You to my little brother for always being my big protector even though he was younger than me. Thanks for always having my back and watching out for me. Thank You to my grandparents who have dished out so much money over the years to always make sure we had the things we needed. A special thanks needs to go to my husband. He once told my mom he thought god had put him on this earth to be able to take care of me. Not many men would be able to deal with everything I have to go through and the moods I can go through too. It's not easy loving me and yet he does it every day with every ounce that is in him. Thanks to you all for always believing in me and not letting me get down. You're the best family I could ask for. Also to Logan, I know you're only three right now, but I just want to say thank you for always making your momma smile. That precious little face is what keeps me going everyday. I Love you so much for that Logan!
From The Start
