It was a Fairy Tale: Thank Yous

~~My thank yous~~

Thank you to Ed Stanco, his amazing family, and all of those at King of Prussia for everything that they do for the sport and for making me a part of their family and their stable. Thank you, Ed, for helping make my dream come true.

Thank you to Hunter and everyone at TaylorMade for inviting me to come and for allowing me to see the Princess, and for the amazing gift that you gave us. You truly blessed us beyond anything we could have imagined.

Thank you to Adrian and those at Ashford for hosting us and for everything that you did for us when we were there. Thank you for making us a part of your life for the days we were there and for taking such great care of us.

Thank you to Giulia Mattarello and Winstar for inviting us to come see your farm and for the gifts you gave us. We're incredibly thankful.

It was a Fairy Tale: Part 2

Reluctantly, we said our goodbyes to the stallions, after getting permission to come down and visit them later if we wanted, we made our way back to our car. This is when my heart started to pound and my mind started to race. Would I connect with her as much as I had thought I would? Would she like me? How was this going to turn out, was it going to turn out like I had envisioned? Well by the time I had pulled myself out of my thoughts we had made it to TaylorMade farms.

We were greeted by Hunter Houlihan, one of the first people we had been in contact with and who helped make the whole trip possible. Only arriving a few minutes after us he had brought lunch for my mom, him, and I to share and have a good conversation over. Entering the main office we were brought into a room to settle down and eat lunch in, and already set up at the table were gift bags for my mom and me.

As we ate we were introduced to several great people who worked at TaylorMade, all of whom were the nicest and made most open people I'd ever met. I was treated as if I were a normal human being, something that doesn't always happen with people I just met. But the bond over horses and Princess made the perfect conversational piece. I was able to share a bit how I got into the sport and why I had latched on so closely to the Princess. And that's one thing I'm not shy sharing about with anyone.

After we had finished it was time to head to the stables to meet my girl. By now my stomach was full of butterflies and I was pretty quiet the whole ride up to there, something my mom would say is a rare sight. The front area of the yearling barn, where they were keeping the mares that were going to sell at the Fasig Tipton sale in November, had some pretty important people standing in front of it. An photographer from Bloodhorse magazine, the two people who run a photography company called Equisports, and John Hall, the yearling manager. As they prepared to bring Princess out Mr. Hall and I were able to talk a bit about my trip so far but the only thing I could really think was, “Wow....is this is really happening!”. And then THERE SHE WAS!

Princess's groom led her out of the barn in all her glory and had her stand center stage, just where she likes to be, for our meeting. Tall, regal, and glimmering she stood inspecting the audience in front of her with great curiosity. The camera's snapped pictures and she held her neck even higher and turned her face so that they could get her best side. While she posed and soaked in all the media's attention I stood in silence taking in the beautiful horse in front of me with open mouth. Mr. Hall smiled at me and led me up to where she was standing, my legs were shaking, and I was glad to be wearing my leg braces. I slowly held out my hand for Princess of Sylmar to sniff before placing the other gently on the side of her withers. We both stood there a moment looking at each other, her big brown eyes looking at me with a gentle curiosity and me looking at her with awe. Gently I began a soft stroking of the Princess's copper coat, my eyes never leaving her face even after her face had turned away from me to look at the rest of the press. But as soon as my hand reached into my pocket for a peppermint I had all her attention. Though she didn't quite care for the peppermints, spitting them onto the gravel, she did eat all the carrots I had brought as back up in case the mints didn't live up to her approval. That's when I remember leaning into her and giving her a gentle hug, my head rested on her side. It was something I had wanted to do for a quite a long time.

Just when I thought it couldn't get any better, Hunter had called Ed Stanco for me, and for the first time we talked over the phone. I'm not sure if I said very much because my jaw was on the floor as I tried to process what was going on around me. But I do remember what he said to me and I don't think I'll ever forget. It was a special moment for me indeed. And though I'd like to share his words, for now they are for just me and my mom to know. That conversation is something I treasure greatly.

Once I had returned the phone to Hunter all of us walked into the barn where I was allowed to co-lead Princess up and down the walk-way. As we did so I was in silence watching her long legs move gracefully and the rhythmic sway of her body and head. And one could tell that she wasn't something just thrown together in an accident, every part of her was shaped and molded perfectly to create a masterpiece.

We returned Princess to her stall to brush her off and give her some more attention, that's when I got a one on one lesson on how to groom a horse and how to find a horse's soft spot from Mr. Hall himself. And then all too soon the visit with the Princess was over. After seeing a couple other horses who were stabled there, My Miss Sophia and Egg Drop being two of them, it was time to leave for the day. But Mr. Hall insured us that we were welcome to come back any time that week to feed the Princess some more carrots and give her some more attention. We would return the in the morning before we left Kentucky to say goodbye.

But our day wasn't over as we had been invited by Winstar to come and see some of the stallions that were there. Inside we were greeted and given a tour by Giulia Mattarello, bloodstock assistant and Stablemates coordinator at the farm. She took us around the farm to see some of the horses that were in training and then led us to see some of the great stallions that resided there. Unfortunately many of them were out in pasture but some were close enough that we could see them a little ways off. After getting snubbed by the mighty Tiznow and feeding a peppermint to Speightstown we returned to the main office to say our goodbyes and thank yous.

Once back at the guest house at Ashford my mom and I finally sat down to catch our breath and it was then that it registered that I had finally met Princess of Sylmar. I was all smiles as I flipped through the pictures that my mom had taken of me with the Princess. Only when she asked me to come into the dining room did I look away. While we had been out we had received flowers from Ed and his wife Ina. And they were the most beautiful flowers I had ever seen. It was then my mother said what we had been saying all day long: How incredibly blessed are we! That night I had a hard time falling asleep because I was so wired with memories and excitement from all of that day's activities. Like a movie I kept rewinding everything in my mind, replaying the most magical moments. Eventually I fell asleep.

The next day was going to be another busy day in Kentucky as we were going to Keeneland for a day at the track. I had never been to a race track before and I honestly couldn't believe that the first track I would be going to was Keeneland. I had only heard stories about how beautiful it was and I couldn't wait to see it in person. Adrian and his wife arrived with our tickets and a special pass that would allow us to sit in Ashford's corporate box. Grinning I glanced from the tickets to my mom and then back to Adrian and thanked him 100 times over again. He would meet us there, he said, and so my mom and I set off for our day at Keeneland. It was overcast that morning, casting a gray shadow over everything but the moods of the people walking through the gates charged the air with energy. My mom and I followed the crowd of people and after asking for directions my mom began to push my wheelchair towards the elevator to the box where we would be sitting. As she pushed I took in my surroundings with wide eyes and a racing heart (excuse my pun). It was a busy day as the Queen Elizabeth Challenge Cup was going to be run that day along with another major race. And the buzz from the growing crowd sent a rumbling through the ground and filled the air. I turned to look at my mom who had been watching my reaction and she smiled at me.

We got settled in the corporate box and I immediately went to sit by the window to watch the post parade for the second race on that day's card. I looked through the program to pick out the horses that I thought may win in each race. I read over each card looking at each horse when I noticed that two of my favorite jockeys would be racing that day. I smiled to myself and told my mom that I wanted to meet some of the jockeys before the day was over. Just as I finished picking out a few horses from the first four race they had all been loaded into the gate and were just about to break. My heart was pounding as I watched them break and take off down the track. It's one thing to watch race after race on television but to see the horses running in person was something else completely.

Then Adrian arrived and sat down to help me handicap the races and even took me to place my first bet. Though we didn't end up winning that one it was just the excitement that made me happy. Together we watched the races and waited for the Challenge Cup, a race that Ashford had a horse running in. Then as race 8 ended and Queen Elizabeth Challenge Cup preparations began Adrian presented my mom and I with two paddock passes. I hadn't expected to get that close to the horses and I fought the urge to jump up and down.

We walked down to the paddock to watch their horse, Minorette, get ready for her race. She's a gorgeous filly and well mannered. I began to inspect the other horses that were there and noticed one filly that looked very familiar. She was a tall filly with a darker coat but there was something there that had me thinking I had seen her before. So I glanced down at the card and finally put two and two together. It was Crown Queen, half sister to Royal Delta, a horse that had been amazing on the track. One that my Princess had raced and won against. That was the icing on the cake, I thought, as we followed the horse down the tunnel and then stood in the winner's circle waiting for the horses to be loaded.

I was as close to the rail as I possibly could be, my arms resting on it and my attention focused on the gate. And just like that the race had began. The crowd got louder as the horses came down the stretch and pretty soon I was urging the horses under my breath. Crown Queen won it under John Velazquez. I now knew why so many people loved coming to the track. The thrill of watching the horses cross the wire in person surely beat watching it through a screen. The crowd's energy and the sounds of the hooves thundering on the track added to the excitement and the atmosphere to create something truly special.

As soon as we decided to stay by the rail it began to rain and like the unprepared tourists we were my mom and I had forgotten an umbrella. Luckily we were saved by one of the workers who had a spare and he and I began talking about our trip and the races. Though I can't remember his name he was one of the sweetest people I had met on my trip. He had such a warm smile and great heart. We spoke about the up-coming race and what horses I had picked to come in 1^st, 2^nd and 3^rd.

Just after we shared our picks the race began and as the horses crossed the wire we all laughed. Of course the race I hadn't bet in, I ended up having a perfect trifecta. By the end of the day I had been able to meet both Irad Ortiz Jr. and John Valezquez, two of my all time favorite jockeys, and gotten a picture and autograph.

The day at Keeneland came to an end just as the rain began to start. Saying goodbye to Adrian and to the rest of the Ashford team that had sat with us in the box, my mom and I drove out for dinner and returned to the guest house for our last night. That night the exhaustion took over, but not before I dreaded the next day when we would have to leave. Once again I fell asleep thinking about all the blessings that had taken place that day.

We had packed and were pulling out of Ashford around 10:00 am the next morning and took the familiar route back to TaylorMade to say goodbye to my Princess, the horse that had made my whole trip possible.

This time as she was brought out the air was still and the only sounds were that of the other horses out in the pasture playing around. There was a moment between Princess and I that I won't forget. It was a quiet and peaceful meeting this time. I was able to just stroke her and thank her for everything that she had done for me and gotten me through the previous year. She ate a couple more carrots and I gave her one last hug and kissed her nose before she was returned to her stall.

It was a bittersweet goodbye. Sweet in knowing that my dream had come true and that I had been able to thank her for everything, that I had been able to see the horse that had changed my life so drastically. But bitter because I knew she would be sold the next month and I knew that I probably wouldn't see her again.

As my mom and I began our long drive back home I kept thinking about what people had been saying to me: Once you visit Kentucky you'll never want to leave. And I can say that's one hundred percent true. I'm counting down the days until I can come back.

We learned that the TaylorMade team had put together a collection to help offset the cost of our trip, resulting in $640 dollars for us, much more then we spent on our trip. That money will be used to help fund my next Kentucky trip so I can attend the Breeder's Cup that will be held at Keeneland next year.

Following the Princess and the world of horse racing has changed my life so much. Not just in the opportunities it's given me, but in the way it's changed who I am as a person. I want to pursue a career in horse racing and I know that I want to be as involved in the sport as I possibly can. For now that's going to be running my Princess of Sylmar fan page on Facebook and updating the fans on Princess's new life at Shadai farms in Japan and bringing them the latest news of what's going on in the sport.

The flowers from King of Prussia stables

Keeneland

Horse heading towards the track

At Keeneland!

Me saying goodbye to the Princess

My Paddock Access

Me with Johnny V! He was really sweet!

Me with Irad Ortiz Jr! He's amazing

The legendary Speightstown

 

Winstar

 Me and the Princess

Me and the Princess (Equisport photo)

Me and the Princess (Equisport photo)

 Talking on the phone with Ed (Equisport photo)

 Me and the Princess (Equisport photo)

 

It was a Fairy Tale: Part 1

Almost every little girl dreams of meeting their favorite princess. Every little kid dreams meeting their hero or favorite sports star. It's very seldom that they get to meet all three of them in one day and it's even more seldom that all of these things are wrapped up into one living creature. I got the chance to meet my favorite Princess, my hero, and my favorite sport star on October 10^th this year: Princess of Sylmar.

For those of you who don't know the story of how I fell in love with the champion mare this is a short recap: I have a form of Muscular Dystrophy (MD) called Charcot Marie Tooth, or CMT for short. CMT affects the nerves in my hands and legs causing weakness and sometimes a great amount of pain. Most days I wear leg braces and on the not so good days I use my wheelchair. To me, my disability isn't anything new since I was diagnosed when I was younger, but in 2013 my cycles of pain were more frequent and more extreme, leaving me unable to move on my own and often times very sick.

The day that I first saw Princess I had left school early because my legs were in another cycle of fatigue. I was resting upstairs when I got a text from one of my friends, an avid horse racing fan as well, asking me to watch the 2013 Kentucky Oaks for her and let her know who won. At the time I wasn't a huge racing fan. I was the kind who only watches the big races when they're on TV since I didn't know anything at all, but I agreed because I was curious. I was just in time to watch the post parade when I noticed the gorgeous filly, whose name was Princess of Sylmar. The first thing I noticed was how beautiful she was--absolutely gorgeous! The second thing I noticed was the jockey who was riding, Mike Smith, who was the first jockey I had ever seen race before. I had watched as he won on Zenyatta in her first Breeder's Cup win.  I decided to place my imaginary bet on Princess, because I thought she was awfully beautifully and she was the longshot. I focused on her from the time the gate opened to the moment I saw she was powering down the stretch to win. I was impressed. But didn't think much about her a couple days after the race, that is until she was running in the Alabama Stakes.

I saw that race by pure chance. At a hotel and flipping through the channels I heard a familiar name being called out on my screen. Princess of Sylmar. She won that race too, that's when I knew I needed to learn more about her. When I got home I did research like I was a scouting agent and by that evening I had set up a fan page on Facebook. Every time Princess ran I made sure I had some way of finding out how she did. I would check Twitter every morning to make sure that she was healthy and happy and after every race my first thought was to check to see if she came out of the race in one piece. Fast forward to the end of the year, my page had bloomed with the help of great friends sharing it and the awesome fans that had soon became friends of mine. I had the chance to talk with Ed Stanco and other members of his family through Twitter and my page and soon I felt like I was apart of Princess's inner circle.

Princess of Sylmar came to the scene when I needed something positive in my life and she became the positive influence that I needed in the nights when I couldn't sleep because my pain was too great or I was up again with throwing up because my body was so tense. She had a way of presenting herself that made her great to watch. She was so calm off the track but as soon as she set foot on the dirt she became a queen. When she didn't win the Eclipse Award, I was upset, but to me she was a Champion with or without the official title. I did my best to raise money to watch her run but by the time I raised enough by selling bracelets she had been retired. While I was glad she was retired in perfect condition I wondered if I would ever get the chance to meet the racehorse that changed my life.

So I messaged Ed Stanco over twitter and asked him where she would be residing until the Fasig-Tipton sale in November and asked if there was a way I could go to meet her. When he replied and told me she was in Kentucky (a 900 mile drive from my home in Texas) I was over the moon with excitement. That night my parent's had agreed that I could meet her in a few weeks. That night I cried myself to sleep with happy tears.

In the days to come we began planning where and what we would be doing during my 3 day stay in Kentucky. We knew that we would want to go visit Keeneland, the first race track I would ever visit, and I also knew that I would want to visit Ashford to see Majestic Warrior (sire to Princess of Sylmar).

Amidst all the planning we discovered that almost every hotel within the area was booked for the days we were going to be in Kentucky, but when Adrian Wallace, nomination sales at Ashford, heard about our struggle to find a place he offered us the guest house on the farm free of charge, making our many blessings overflow! Our plans very quickly formulated and before we knew it we were packing for Kentucky: We would leave Texas on Wednesday (the 9th) afternoon after school and stop in Arkansas on that night, then Thursday we would drive all the way to Kentucky to Ashford where we'd be staying. Friday was the day we'd see the horses at the Ashford farm and after lunch at TaylorMade, Hunter Houlihan (farm account manager) had arranged for me to finally meet the Princess. And along the way we got a call from Winstar inviting us to visit them! I had never thought in a million years that I would have a farm calling and asking for me to come visit them.

The drive was eighteen hours long broken up into 2 days. I didn't mind a single moment of seeing the trees that were changing colors or the beautiful hills, or the wide open sky. I only started to mind the scenery when we were about 20 minutes away from our destination! That overwhelming, antsy feeling of excitement and claustrophobia that seemed so strong I felt like I was going to burst if I didn't get out of our car in front of Ashford Stud right then and there!

Well those 20 minutes, eventually passed, and by late Thursday evening (sorry about that Adrian.....) we were all set up in the most beautiful guest house I had ever seen in my life. We had food provided for us for our breakfasts and beautiful rooms ready. Needless to say that night I had a very hard time falling asleep as I thought of all the things I would be doing the next day and all the memories that I would be making. I was up on Friday at 8:30 ready for the day to begin and as I waited anxiously for my mom to finish getting ready I stepped outside and for the first time took in the surroundings of my home for the next couple days. Acres and acres of green pastures, beautifully built buildings and barns, the sweet smell of wet grass, the brisk air, and the distant sounds of horses. By 9:30 we had started the tour of the farm, a personal tour give to us by Adrian Wallace:

First we drove up to the yearling barn to see a horse with a lot of promise, or so Adrian said, as he was keeping the yearling's bloodlines a surprise. As we walked into the barn, actually every barn we went to, we were greeted by some of the nicest workers who were more then happy to show me around. Then they brought out one of the biggest yearlings I had seen. He looked familiar in coloring and stature but I couldn't put my finger on it. Curiously I looked to Adrian for the answer: I learned that he was Zenyatta's full brother. I was speechless. He's was a big colt for being so young and well built with similar color to his sister and very well mannered. Even without a name he had a big personality and knew he was something special.

After a picture and the chance to pet him we moved on to the broodmares when I got to see the famous mare Take Charge Lady, the mother to Take Charge Indy and Will Take Charge, who was very curious about my service dog. She was a beautiful mare with the gentle eyes of a woman who was quite used to being spoiled.

We also got to see a couple of the weanlings and then we moved on to the three stallions that were at the farm, (the others were in South America and over in Europe for breeding but would return later): Giant's Causeway, Thunder Gulch, and the one I was most excited to see, Majestic Warrior. How would I describe him? Simple: tall, dark, and handsome! Now I haven't seen many stallions up close and personal but I can honestly say, without a doubt, that Majestic Warrior is flat out gorgeous. And he was as well mannered as he was good looking. All of the stallions were tolerant of my tentative touch and awestruck demeanor. We took tons of pictures and a video of Majestic Warrior's stride and before we knew it the time had flown by and it was time for the main event of the day: lunch at TaylorMade and meeting the Princess.

Me with Giant's Causeway

Majestic Warrior

The great Thunder Gulch

Me with Zenyatta's full brother

 Me with Take Charge Lady

Truly Accessible

Before I begin I want to give a shout out to my friend, Courtney for helping me edit this!

Almost every place I have ever gone to says that they are handicap accessible. That means that I should be able to get out of my car and into the building without any trouble, the doorways should be large enough for my wheelchair to fit through, that they should have have an elevator or a ramp if there are flights of stairs, and I should be able to get into the bathroom without any trouble. However, more often than not I end up finding at least one thing that gets in my way. What I've come to realize is that legally the buildings, sports centers, restaurants, et cetera are 'handicap accessible' (as the ADA presents them). Nothing is more stressful to me then going out when I'm in my chair because I worry about places being truly accessible. Not in the legal sense but in the sense that I can get my wheelchair around without knocking things over or getting stuck. I'd like to go to Starbucks and be able to grab my drink without having to struggle to grab it because the counter is too high. Believe it or not but that's stressful.

           Before I begin my rant let me start by saying that most places try to work with my family and I if there is an issue concerning my wheelchair or it not offering what I need to get around. But usually if I come back the store owners still haven't fixed the situation. I'm going to share three (3) stories that I think will make y'all cringe but also (hopefully) open your eyes to these situations. I didn't notice all the problems until I was in a wheelchair so it's easy to glance over them and not have  it once cross your mind that something is wrong. So without further ado, story number one-

           Part of the reason I had such a hard time at school was because of my disability. I kept being pushed into the vicious cycle of exhaustion -- which triggered my pain,-- which then caused me to miss school, then once I was better I would attempt to catch up...which only lead to exhaustion once again. The cycle went on and on. A side affect of having my leg pains was me having to use my wheelchair which I honestly didn't have a problem with because I knew I had friends to help me get to classes. The teachers and the staff there were really willing to work with me when it came to getting around and catching up on my work. That was a huge God send to have people willing to work with me so I could get things done. While the people in the school were great, the building itself was horrid. Let me try to paint this picture as best I can: There were only two elevators in the whole school. One on the main floor that went up three floors and one in the other building that only went down to the base floor and back up to the 2nd floor. To get to these elevators I'd have to wheel all the way to the other end of the school to get to most of my classes and to get back downstairs. The elevators also were not very large and had the problem of shaking when they stopped moving and the door opened, which did not reassure me that I was safe.

           The school also didn't have ramps inside or outside. Yes they had a ramp to get onto the sidewalk but those were only on one part of the sidewalk meaning I'd have to wheel to one end of the sidewalk or the other to get up. Inside they were lacking a ramp which concerned me if there was ever an emergency situation. I'd have to rely on another student or a teacher to carry me out of the building. Even if I wasn't in my wheelchair I don't trust my legs to take the stairs because of how many of them there are. The bathrooms were not so great either. The handicap stall by the cafeteria didn't have a support bar (you know that large metal bar that is in most stalls to aid people in standing) on the wall by the toilet...they had the bar on the opposite wall. Why have the bar on that side? I don't understand.

           Also the bathroom stall didn't lock so my friends would have to hold the stall door for me.  The last bad thing I have to say about the school are about the cafeteria and class rooms. The average classroom could not fit my wheelchair in it without it being in the way -- which meant that I had to park my chair in the corner and walk to my desk. The fact that I had to park my chair wasn't the problem. It was the fact that if I couldn't get up and walk to my desk or transfer myself, I'd have to sit up front at the teacher's desk and wouldn't be able to socialize as much with the other students in my class. The cafeteria wasn't handicap accessible either. The tables and chairs were so close together and I couldn't get my chair in and out comfortably and I had to sit jutted out in an awkward angle. This also made it hard to get from the lunch line to my table because people couldn't move their chairs in enough because of the cramped spaces.

           Second story has to do with a drive in theater that I went to this last weekend. I had a great time,-- the staff was great and I really enjoyed the family time. But I couldn't help but notice as I walking to the concession stand that the road was completely gravel. I'm not sure how many of y'all have ever tried to wheel a wheelchair over gravel but it's hard. Really hard. I kept going back to the thought “well all they need to do is put some concrete here and there to fix this”. It seemed so obvious to me until I realized that it wouldn't ever cross anyone's mind. While we waited for the movie to start I went into the restroom and noticed how narrow the walking space between the two walls of the stalls was -- not nearly wide enough to fit a wheelchair into. There was no way my chair, let alone a power chair, would fit in here. The movies are about an hour and half each each and we were there to see two movies. How horrible would have been to have to use the restroom and not be able to get in.

          My last story is probably the one that upsets me the most. Not because the building was not accessible, which it was, but because the people inside would not assist me and one of my best friends. Gilley's is a venue that is mostly used for concerts. My friend has been to multiple concerts there and has called ahead in the past letting them know she was coming and that she was in a wheelchair. They took no interest in that. Once she and I arrived at the concert last December to see one of our favorite singers we realized that there were a lot of people there. Most of them, of course in the front of the stage already (there were no seats, it was basically first come first serve in the respect of seating).

           Not knowing what to do we decided to get as close as we could but still we couldn't see over the people standing in front of us (we were both in our wheelchairs). When my friend went to the security guard to ask if they could help us move to the side of the stage or to the front so we could see they simply looked at her and replied “No, we don't do that. You’re a liability because of your chairs.” She also approached the manager who basically said the same thing. What upset me most was the fact that he walked away after that. No one offered to help us get in a place where we could see the performer that we paid to go see and had looked forward to that moment for months -- just like everyone else. And we couldn't see. What I don't understand is why they were so close minded on helping us. I mean isn't making sure that consumers have a great time what most businesses want? To assist their consumers? Can you imagine how much more money they would make if they treated people who are in wheelchairs or who had any other type of disability with more respect because those people would be more willing to go to that venue and pay?

           I understand that remodeling and making sure that places are accessible costs money and can take a while to work out, however it's something that will benefit both the businesses and their consumers. It's not like we're asking you to tear down your entire structure. We're asking you to making something accessible even if that's just adding a ramp or making enough space so someone in a wheelchair can get into the bathrooms. To me that's common courtesy. I implore you to speak out and suggest changes to buildings or stores if you ever see a problem that has to do with being accessible. Ask to speak to the manager, write a letter, blog about it, use social media.  It'll make going out a whole lot more enjoyable for me and others who are in wheelchairs if we can actually get around without such huge problems in our way.

XOXO,

Dana

Ummmmm some ramps that are suppose "to help".

 

 

(non of these pictures our mine, found on https://disabledaccessdenied.wordpress.com/tag/the-worst-wheelchair-ramps-ever-made/)

Inspiration Porn

A/N-Before we begin....I'm on Facebook! Just let say I have no idea how to run a personal blog page so bare with me as I figure that out. I'll share the link to that below. Also I'm sharing a link to a video called "I'm Not Your Inspiration, Thank you very much", a talk by Stella Young. When you read this post and watch the video you are going to notice a lot of similarities which I didn't do on purpose at first. I then watched the video after this was typed out and almost everything she said I had thought, felt, and/or written down.

   Hey everyone!
   
   It's no secret that I like to work out. Well, OK, truthfully I hate working out but I'm always glad I did afterwards....isn't that what it's like for most (sane) people anyway? While I work out I like to listen to motivational speakers and most of the time the speech is accompanied by a sports montage which doesn't bother me at all. Now as much as I love able bodied sports I'm, of course, drawn to Paralympic sports because I see myself in those athletes more then those athletes in able bodied sports. Personally I love, love, love it when people make montages of Paralympic sports and add a motivational speech because it's often done in a way that isn't singling us out or idolizing us. It's showing us as the athletes we are and they have a motivational speaker in the background just as they do for Olympic and other sport montages. It's a normal thing to see on YouTube.
   But what does bother me is when the see videos that have this slogan in the description, at the beginning, in the title, or in the comments- "When you're down, watch this!". Then proceeds to show a video of people who are "disabled" (I hate using that word) doing sports or living life. People are comparing their lives to ours in ways such as "Oh my man well I was having a bad day but my life isn't as bad as theirs! I am so blessed that I'm not in a wheelchair". As if having a disability is the worse possible thing. I don't want y'all to do that. My life with my disability is hard, yes, but I'm 100% sure that there is something going on in your life that isn't easy and that you wish you didn't have to deal with. I understand when some people look at others who have a disability they think "I'd be pissed off if that was my life". And sure sometimes I am too..however you are still thinking that being in a wheelchair or any other disability is the worse thing that could be going on. Sure my problems may be more apparent, but actually my disability isn't the worse in my life either. I have other stuff that I would change way before I would ask not to have Charcot Marie Tooth.
    People with disabilities don't see their lives are exceptional. At least not me. I'm honestly not doing anything out of the ordinary then other teenagers. Honestly what I do most of the day during the summer is as followers- get up, eat, check all my social media and emails, blog or write something else, listen to music, watch TV, and then exercise. Sometimes I'll go out to the mall and movies with my friends. But I'm not doing anything different then most teenagers except I do it all sitting down or with the aid of my leg braces. Most people who are living with a disability don't want or feel like they should be subject as inspiration.
   Again, most of the time when we are being called inspirations it is from people who are really really kind and sweet and do mean it. I don't so much mind that. That's meant in a positive way. What I do mind is when I see pictures like this on the internet while I'm scrolling through workout inspiration-

 (for those who can't see, the girl has prosthetic legs)

   That my friends is called inspiration porn. A picture or a quote that is used to make others feel good about themselves because they don't have "as a life as that person over there who is in a wheelchair or has a disability so that persons life must be horrid.". This is negative. We don't want you to look down on us as if we are something to be pitied or something to compare your lives to when you think yours is horrible. That's not why we're here. These types of posts make me angry, but most of all they make me sad because I think " is this is how people see me when I go to the gym? Or when I go to the store? Or when I go to the movies?".  I'm living a full life. Yeah at times it isn't fun but that is the same for anybody, regardless if they have a disability or not.
    This isn't to say that people with disabilities don't need help at times. We do need to have access to ramps and handicap parking and stalls in the bathroom. This post is to say that the way we are looked at needs to change. Personally I don't have a problem with someone asking me if I need help if it looks like I'm physically having a hard time since that's what most people would ask an abled bodied person. What I do want to change is a scenario like so:
I'm grabbing a box of cereal off the shelf and someone asks if I need help when it's clear that-

1. I have it in my hand....I don't need help getting it into my shopping cart  
2. I haven't even tried to grab the box off the shelf yet
3. They keep pestering me about it even after I say "No thanks, I've got it. But thank you!" with a smile.

  Now this post isn't just a rant or a bully post. I totally understand that when people usually say "you're so brave" or "you're an inspiration" that they mean it with the kindness of their hearts and that makes me smile. This post isn't meant to offend or critique or rant. This is meant to be an eye opener. I know it's hard to change the way you think, especially if you've been in a mindset for a long time, but if you can try that is all I ask. Try to look at the disabled community as people who are just living life a bit different then you. Not as an inspiration. Going to the grocery store or working as a doctor while in a wheelchair or having another disability shouldn't be a surprise or anything out the ordinary.
   It's up to the disabled community to spread awareness that we are people and we are just living a life that looks a bit difficult. We need to be open and thankful that we get the chance to educate.

XOXO,
Dana

Facebook link- https://www.facebook.com/pages/Here-I-Am-On-My-Way/1438109616460397?ref=hl

Stella Young video-

 

Why I fell in love with "The Fault in Our Stars" (before it become a movie)

I read the Fault in Our Stars by John Green about a year ago, before news of the movie even came out. I read it per request by a friend who told me that it was worth reading and because she thought I'd like the way it was written. And boy was she right.

Just as Hazel Grace says about Imperial Afflictions, John Green is the first author that I've ever read who can portray an illness/disability and make it seem like a minor detail while still making it apart of the story...as someone with Charcot Marie Tooth (a neuropathy that makes it painful and tiring to walk and causes me to get sick more easily) there are actually  themes of the book I can relate to. Which is rare.
 
   Now I'm not saying that my life is any way as hard or painful as Hazel Grace's or Augustus Water's. I'm not saying that at all. I'm not dying. There is a very good chance that I will live into adulthood. I live a life that is probably much easier then most people in my situation. But my CMT isn't going away. In fact, more then likely, I believe that it will progress. There is a good chance that I will someday be permanently in a wheelchair. I know for a fact that I will always be tired and weak and get my pain cycles. There are parts of Hazel and Gus' story that tug at my heart string. For example: when she is at Anne Frank's house and has such a hard time making it up the stairs? I've been there. That feeling of  "I can do this. I don't need to be different then the other people here". That feeling of "I'll show them". That feeling of "I'm perfectly fine, I don't need to be treated like someone who is sick" while in truth you are that person. You are that person can't do all the things someone else can do.
    When Gus is calls Hazel in the middle of the night sobbing and it turns out he was trying to buy cigarettes because it's the "one thing he wanted to do on his own"? I have felt that so many times.  The feeling of wanting to be able to rely on the body that is suppose to ABLE you to do something not hinder it. The feeling of why even exist when my life is so full of sickness? All of these parts of the book (and Hazel's questions and overall being) were what hit home for me and caused me to enjoy the book so much. Because I can relate. I know that I've felt that way at least once in the 16 years that I've been alive.
 
   Why do I love Gus so much? It's not because he's dreamy and mysterious, though that may be part of it.. It's because he sees Hazel as who she is as a person and not the illness. He treats her as if she is not her problems. The part in the book where he asks what her story is and she begins to tell her cancer story? He interrupts and tells her he wants to know HER story, not her cancer story. He wants to know her dreams and her hobbies. The unique things that set her apart from everyone else. That's what I want. I want a man to love me and not to linger on my disability. John Green doesn't romantize the illness. He romantizes the love between two people who just happen to have an illness. Sure Gus worries and makes sure that Hazel is OK to do something, but he doesn't stay bent on the subject for too long. He plans ahead to make sure that Hazel has everything she needs, yet he doesn't worry about the moment. He wants to live and he wants to live his life with Hazel no matter how hard it gets.
 
John Green has done something that no other author that I've ever read (and there have been ALOT) has ever done before. And that is write a book that has deeply impacted me because I can relate to the main character without feeling like something to be pitied or something to be idolized. He has penned a story that doesn't linger so much on the life that a chronic illness or terminal illness can take away but instead focuses on the life that one can live while surviving and dealing with the illness. This is something special. And something that I, someone with a disability, hardly ever get.

John Green gave us a positive light to shine through, even if that wasn't his intention when writing 'The Fault in Our Stars'. He gave us a voice that is telling the world that we are living a full life. That is what we strive for each day. To live a full and happy life. And that is something that I am so very grateful for. So, Mr. Green, if you EVER happen to stumble across this or actually read it, I (on behalf of me and my friends who struggled with any type Muscular Dystrophy) would like to say thank you. Thank you for writing a book that I can relate to and have fallen so in love with. It hold a special place in my heart for a different reason then most people have.

Sincerely,
Dana

My Love for Horse Racing

I decided to write this today because I'm having a pain cycle and I was rewatching Princess of Sylmar races and the idea hit. Actually I've been meaning to write something like this. I'm sorry that it's not much.

 

You guys all know my story, because I've previously posted about it, but for you guys who don't know...here it is in a nutshell:

 

When I was five years old I was finally diagnosed with a form of Muscular Dystrophy called Charcot Marie Tooth (CMT), a neuropathy that affects the nerves in my hands and legs. It wears away the coating of the nerve leaving it exposed and causing weakness and pain.

At first my disability changed every aspect of my life as I learned how to live with it...and then eventually I got the hang of living with the tiredness and pain cycles since they were few and far between. Physical therapy helped and I got stronger. But lately my CMT has gotten more progressive; over the last four years I've gotten new leg braces that I wear if I go to exercise, I now use a wheelchair for a lot of the errands I run, and I use a walker too. I've dealt with my pain cycles starting up faster and staying longer. All of these changes started to mess with my life. While I still excel in school and all of my classes my athletic life has been put on hold. I used to compete in swimming but every time I start to make progress another pain or fatigue cycle kicks in and I have to start all over again. There are very few sports that are around for me to participate in that don't put negative pressure or strain on my legs; swimming is about the only sport that allows me to perform as if I didn't have my disability.

But there is one other sport that I can participate in heavily. Thoroughbred horse racing. While it all sounds cliche, horse racing is a sport that doesn't require me to be physical other then walking down to the track to watch the horses. I know very well that I can never be a jockey, but that doesn't matter. The fans and the spectators are just as important as the trainers, owners, and jockeys. I mean without us there wouldn't be much of a sport. From the side lines I can act as announcer, share the news, write articles, follow the careers of legends. Not many people get the chance to connect with a horse or a sport the way I have with racing. But those who have they know what I'm talking about. Watching races of horses whom I've fallen in love with has given me an outlet for my emotions. I get a sense of pride and hope watching them. Watching the horses run is beautiful to me...maybe it's my envy that I can't run like that.

I've been able to meet some of the best people in the world through horse racing including three of my best friends and many other people who follow a fan page that I run on Facebook. Through them I've been able to learn so much and get so much more experience then I ever thought I would.

I've been blessed to watch two talented horses run: Zenyatta and Princess of Sylmar. Queen Z was the first horse to capture me. She sparked something in me. And I think I fell into horse racing because of her. At the time I had just moved and was dealing with introducing people to me and my disability. A thing I didn't have to do before since everyone knew about me. She was a powerful mare. So tall and agile. And to watch her dance up to the starting gate was something I looked forward to each time she ran. The second filly to catch my attention was Princess of Sylmar. This filly is a four year old from Pennsylvania. And a talented one at that. I watched her win the Kentucky Oaks and the Alabama Stakes from the comforts of my living room and she sucked me in. Her charisma and her attitude was so magnetic that you can't help but smile when you see her. Watching her run has gotten me through many pain cycles and new experiences with my Charcot Marie Tooth. She gave me something to look forward to when I was sick and tired and ready to just give up with trying to get stronger.

How could horses do this? I'm not sure....its hard to describe...all I can do is say thank you to the trainers and owners and the horses..

XOXO,

Dana

 

A Zenyatta (the mare) edit that I made:

A Princess of Sylmar edit that I made: