Tag Archives: Shriner’s Hospital

The Shrine Bowl of 2003.

25 Nov

Ten years ago, as I was riding back from one of my weekly physical therapy sessions with my mom, I received a phone call informing me I had been nominated to be the Shrine Bowl Queen. At the time, I wasn’t sure what being a Shrine Bowl Queen meant, and I didn’t know there was a football game that took place every year in the Carolinas hosted by the Shriners.

As months went by following that first phone call, I received more phone calls informing me I was a finalist and finally that I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. I didn’t know what to think. I was excited, obviously. However, I was confused as to how I’d been chosen. Apparently, as I later learned, I had been one of the few girls who had been chosen out of the thousands of patients who had been in and out of Shriner’s Hospital for Kids in Greenville, SC, over the past year. Though sometimes it still blows my mind that I was picked out of all the others girls that year, I’m proud. I was chosen because I had stood out. However, for once, I didn’t stand out because of my disability (since the majority of the kids at Shriner’s were disabled too). I stood out because someone saw me as one of the patients at Shriner’s who had faced a lot, but was still able to have a smile on her face and a lively laugh despite the pain.

Being named “the Shrine Bowl Queen” involved attending two required events. The first event was a parade that took place in Myrtle Beach, SC, in which I rode on a float (along with the Shrine Bowl King) to support the Shriners and the Shrine Bowl game that would take place in the Spring. The second event was the Shrine Bowl itself. Though I don’t remember the outcome of the football game, I remember being so incredibly nervous, but also extremely excited. As time passed during the first quarter, I knew the chance to make my appearance was getting closer and closer. Part of being the Shrine Bowl Queen (or King) involves going onto the football field during halftime of the Shrine Bowl to release a dove into the air. During this time, both the king and the queen each receive a trophy with their name engraved as well as a football that is signed by all the Shrine Bowl players of that year. Though I was excited about having the opportunity to walk out onto the field with the Shriners to release a dove, the thought of being in front of so many people gave me huge knots in my stomach. However, despite the nervousness, I knew that I would walk out onto that field. After all, I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. With all references of having a disability aside, that isn’t an opportunity that you simply walk away from.

I guess you could say that the Shrine Bowl of 2003 was one of the highlights of my time at Shriner’s Hospital for Kids. Though there were definitely some other exciting times that were connected with getting closer and closer to independence, the majority of those memories were layered with months of physical pain. However, the Shrine Bowl of 2003 didn’t include any kind of pain: physical or emotional. It just served as a day which now signifies that I was a patient at Shriner’s Hospital for Children, and I was a prime example of a girl who endured. Though there are definitely numerous moments now in which I’m able to look back on all that I have overcome, being chosen to be the Shrine Bowl Queen of 2003 was evidence that I wasn’t the only one who was able to recognize all that I had endured. Doctors, physical therapists, nurses, and others at Shriner’s who were responsible with making the Shrine Bowl Queen nominations knew it as well. They probably knew it long before I even saw myself as someone who could smile and laugh despite the continued presence of pain in my life.

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Happy (almost) first birthday, lifeintheblueridges!

31 Oct

Even though today isn’t the “official” one-year birthday of lifeintheblueridges, I will be starting NaNoWriMo tomorrow. Therefore, my post tomorrow will be my writing piece for day one of NaNoWriMo rather than a “Yay lifeintheblueridges is one year old today” post. However, I knew that I couldn’t go full tilt into my first NaNoWriMo experience without celebrating the one-year birthday of this blog.

As well as November 1st being the one-year birthday this blog (in which I have written one blog post every day for an entire year), it is also the celebration of the beginning of my journey to find myself. Yes, that may sound cliché, but it’s true. Since I started my blog, I have become a completely different person. When I first began, I had no idea that my words would act as a gateway into what I strive to do in life: advocate for people with disabilities. I first began acting as an advocate in January of this year when I made the decision to share my own story of living with Cerebral Palsy. Though it was a very spur of the moment decision that was made one evening as I sat in bed thinking back on my life in and out of hospitals and how hard it was not having someone who understood my pain and fear, I knew that it was a decision that would stick. I could feel it.

I am proud to say that 10 months later, the decision has remained strong. More than anything, it has grown. Though I know that part of the growth has to do with the inner strength that I have rediscovered within myself, I also know that it has a lot to do with the support and encouragement that I have received from the blogging community. Before beginning my blog a year ago, I never knew that the blogging community was as close to a home with a strong sense of belonging that I’d ever hope to find. Even though I am sure that there will be other places along the way that will allow me to feel a similar sense of belonging, I know it started here. I have no doubt that as I continue to share my story, I will continue to become more confident in myself. However, I also will be sure to not forget those who helped me first begin to recognize my true self: my parents, my friends, my mentors, and all of you lovely blog followers.

It’s always so crazy to think of how much can happen in a year. When I began this blog one year ago, I didn’t know that this is where it would lead. I didn’t know that I would reach a point where it didn’t scare the hell out of me to talk about my life with Cerebral Palsy. I didn’t know I’d be able to talk about certain memories without crying because I could remember the pain so vividly. Honestly, I didn’t think I’d be able to revisit any of the painful memories at all. For so long, they were stored away. I kept them in the dark recesses of my mind, and I never even considered the possibility of bringing them out into the light. The simple thought of reliving the moments in my life that were filled with so much pain and fear was unimaginable. However, I think all of that began to change when I realized that I had the power to help other kids with disabilities feel less alone by sharing my own story. Truthfully, all of it changed because of Grace.

Grace. The twelve-year-old girl who I know who has Cerebral Palsy. The girl who is facing what I’ve faced, and yet always seems to have the biggest smile on her face. The girl who looks up to me as if I have hung the moon and the stars. And yet, she’s also the girl who has the ability to break my heart since, at the time, I knew I’d never be able to save her from the pain. There was nothing I could do that would result in Grace not having to feel the emotional and physical pain that I have had to face my entire life. However, eventually, I thought of a way I could help Grace. Though it may not be in the way that I wished, I know that I can help Grace (and many others like her) by sharing my own story and bringing to light the pain, fear, loneliness and rejection that I have faced throughout my life. Grace. The girl who I feel like I can completely relate to since we know each other’s pain. The girl who often sends me spiraling back into painful memories that have been long gone and over for many years by simply being present in my life. And yet, I long to help her see that she is not alone, that she is strong, and that she is loved. I long to help her see that she is one of the reasons why I’m writing my memoir. Maybe even the sole reason.

Mr. Tim and braces.

23 Aug

For much of my life when I was little, I had to wear AFOs, which are basically braces that I wore on my feet to keep them from turning inwards (before my first surgery, my femurs were turned inwards). Getting new AFOs had its ups and downs. I had to get casted for new braces every time I grew, and most of the time it wasn’t something I was looking forward to. New braces meant fresh “hot spots” on my feet until I could get used to the braces and “break them in” in a sense. Even though we used padding to try to ease the hot spots, they weren’t comfortable. When any body part has to be held in a position that it’s not naturally in, it’s not exactly fun. The one thing that did make me smile was getting to pick my color.

Picking a color for braces is a lot like picking a color for a cast after you’ve broken your arm (which I’ve never done, thankfully). You want something bright or something that makes you smile when you see it rather than frown. I know that many times I chose hot pink and bright purple. However, I remember one special time when I had to get new braces when I was at Shriner’s Hospital. Instead of going for one of my typical bright colors, I picked the bright red that had monkeys on it. I was so excited to be able to look down and see animals. It almost made the fresh “hot spots” worth it. Almost.

The best thing about getting new braces was Mr. Tim. I can see his face in my mind even now. He was the orthopedic doctor that I went to when I needed new braces, and seeing the way he smiled every time he saw me almost made the process of getting new braces bearable. I remember the process so clearly. Mr. Tim started by taking an ace bandage roll and soaking it in what I think was plaster of paris. Mr. Tim then wrapped the ace bandage around my foot and waited a few minutes for it to harden. The next part, the part that always made me a little anxious, was when Mr. Tim had to use a saw to remove the brace mold. Even though I knew that Mr. Tim wouldn’t cut me because I knew how many brace molds he had made, the sound of the saw wasn’t pleasant…and it could make you nervous even if you didn’t think you were one bit scared.

Even though I’m grateful that I don’t have to wear braces on my feet anymore, I remember coming across an old pair of braces when my mom and I were cleaning out my closet a few months ago. It felt good to be able to not even have to hesitate before I told my mom to get rid of the braces, but for just a second, I thought of Mr. Tim and the smile that seemed to brighten even the really hard days.

Blazing my own trail.

18 Aug

As I sit at my desk gearing up for the start of my junior year of college (which begins on Monday), I am amazed at how I was able to keep up with my schoolwork when I was in and out of the hospital for my intense surgeries and intense physical therapy following those surgeries. Granted, I had tutors, and without them, I don’t think I would have been able to get all of my schoolwork done. However, it’s hard for me to imagine that I had so much time. I had time for schoolwork even when it wasn’t the highest priority (though it was definitely the second highest). The first concern, of course, was focusing on getting me as independent as possible through intense surgeries and PT.

I think I’m just very thankful that I was able to stay at the same pace as the rest of my classmates. I still am not quite sure how I did all of it. Maybe I didn’t need as much sleep in those days, or maybe I just didn’t have as much schoolwork as I am remembering. I definitely know that if I was faced with the same situation right now, I wouldn’t be graduating in a mere 2 years. However, that was middle school. Even though my academics were incredibly important, they weren’t as heavily weighted as they are in college obviously. Either way, I feel like I got lucky on that front. Thanks to some really great tutors, I was moving at the same pace as the rest of my classmates even when I was doing schoolwork from the hospital and from home.

All things considered, I am happy that I got the same education as the kids that I grew up with despite my disability. My parents could have chosen a different avenue, but they chose to put me in an environment with every other kid my age, and I’m so glad they did. Yes, I was teased and yes I faced some difficulties that other kids my age didn’t have to worry about. However, I also learned at a relatively young age that I had to blaze my own trail. Best of all, I’m glad that I was put in a regular school environment in the very beginning of my education so that I could get used to being around regular kids. Through this immersion, I learned quickly that I was different, but I also learned that in a school setting, I was treated like every other kid in my class. I was held to exactly the same standards as every other student, and I definitely know that I benefited from that.

It is because of my parents’ decision to place me in a regular school environment and my pure love of learning that has gotten me to where I am today in terms of my education. I am grateful that my CP does not limit my intelligence because school has provided me with yet another avenue that I am able to excel in without being limited. Yes, I may have had to work harder in middle school knowing that I had to get my schoolwork done while also going to physical therapy and having intense surgeries, but I did it. I did it because it was expected of me and because I loved to learn. I’m grateful that my parents instilled in me a love of learning, and I’m happy to say that despite having to focus on my CP as I was growing up, I was still able to blaze my own trail.

Hospitals: Where Time Stops And Yet The Weeks Run Together.

8 Aug

Anyone who has ever had a very intense surgery will tell you that the actual surgery is the easy part. It’s the intense physical therapy sessions that you have twice a day that bring all of the pain, a pain unlike anything you’ve ever known before.

The physical therapy room of Shriner’s Hospital is a room that is very detailed in my mind. First of all, there are 2 doors on either side of a window that lead into the therapy room. If you enter through the door on your right, you’ll see the physical therapists’ desks to your left, a few raised mats to your right, a small set of stairs straight ahead, and a set of parallel bars to the left of the stairs. Past the stairs and the parallel bars and the mats, there’s a relatively big window. Beyond the window is a patio area that has a few benches and some trees, a scene that was probably designed to look relaxing and bring in as much sunshine as possible. A scene that all of the PT patients look at with longing when they are able to catch a glimpse, wishing for just one moment that they could be on the other side of that window.

I went out onto that patio area once from what I can remember. I remember smiling because it was the first time in months that I was able to feel the sunshine on my face. Hospitals give the impression of being cold, dreary, and plain. Shriner’s wasn’t like that. It was colorful, had a game area for kids to play, and had tons of windows that gave you a glimpse into what was happening outside. However, they were still windows. They still acted as a barrier between two very different worlds. Even though Shriner’s didn’t give off the typical hospital impression of being gloomy and full of sick people, it’s true that you lose track of the days when you’re in a hospital. However, in my case, I seemed to lose track of the seasons more than the days. If it wasn’t for the big windows, I would never know when the leaves began to change in the fall or when the flowers began to bloom in the spring. I’d never know that the world was continuing on without me…while I was inside a physical therapy room wanting nothing more than to catch a fallen autumn leaf in my hand or feel the rain on my face.

All the time that I spent in Shriner’s after my surgeries to have intense physical therapy is pretty much a blur. Though I remember specific memories, the time frame I was there is skewed. I can’t remember how long I had intense PT after my first surgery. I can’t remember when I was finally able to go home after that chunk of therapy. But I can remember who my therapist was. I can remember which exercises I hated the most, and I can remember the moments when the only time that I could breathe a sigh of relief was in between the spasms in my legs, the spasms that made it seem as if my legs resembled a rubber band that was being pulled right up until the moment that it almost popped. Though I may not remember days, months, or what time of year it was, I remember specific moments of pain. I remember realizing that there’s only so much emotion that can be held in tears, and there’s only so many times you can scream before the pain is so extreme that it silences everything, even your voice.

A Father’s Love.

17 Jun

I have always been a daddy’s girl, and that fact hasn’t changed even though I’m no longer a little girl. When I was growing up, my dad was my number one supporter. Though I know that my mom supported and loved me as well, there’s something really special about the relationship between a father and his daughter that can’t be replaced by any other kind of love.

Besides loving and supporting me completely and without hesitation, my dad has taught me practically everything I know about life, love, and what it means to chase my dreams and follow my heart. However, one of the greatest things about my dad is the fact that he understands me. He understands my feelings so well that more often than not I don’t have to say much of anything for him to know how I’m feeling. There’s something really incredible about knowing someone who is connected with you in such a way where you don’t even have to say a word for them to know what you’re trying to say.

I remember one specific memory from Shriner’s after my first intense operation in 2003. I had intense physical therapy at Shriner’s twice a day, and my mom and dad switched off every few weeks in terms of who was staying with me at Shriner’s Hospital in Greenville, SC. My dad was unable to be at Shriner’s as much as my mom could, but he was there as much as possible. Anyway, I remember one day right before going to PT. I had to be put into a small wheelchair with my legs strapped down into a bent position. I should also point out that before my intense PT I was in long-leg casts for eight weeks. Therefore, attempting to bend your knees after having your legs completely straight for eight weeks is a kind of pain that I can’t even begin to describe. Anyway, my dad was attempting to strap my legs down, but even before he put the leg plates on the wheelchair in a position where my knees would have to be bent, I started to cry. Not small whimpers, but the kind of sobs that come up out of your chest when you’re scared, in pain, and can hardly breathe. Even though my dad knew that he had to have my knees bent before taking me to PT, he couldn’t do it. I remember looking at him to see the anguish, fear and pain that I was feeling mirrored on his face as well. It was one of the first vivid memories that I have of my dad crying. Even though I didn’t know it at the time, this was a memory that I would come back to in my mind every time I was trying to describe the intense love that my dad has for me. I come back to this memory not because it brought me pain and fear, but because even though it shows my dad’s love for me, it also shows his empathetic nature that I have found within myself over the past few years.

Webster’s dictionary defines love as “an intense feeling of deep affection,” which seems fitting since scientists and poets and musicians alike have all been looking for the true definition of love for centuries. As well as teaching me empathy, my dad has also taught me what love truly is. From holding his hand ever since I was a little girl to the recent days of listening to him relearn how to play the guitar, I have known what love is through my dad’s expression of it towards me. Not a day goes by that I am not grateful to have such an amazing father in my life. And even though I am getting older, I know that my dad will always be here to welcome me home into one of his hugs that holds more love than I can even express. So yes, today is Father’s Day, the day that we go out of our way to tell our dads how much they mean to us. However, for me, every day is Father’s Day. No amount of words can express the insane amount of love I have for the man who taught me to follow my heart, no matter what.

“My father gave me the greatest gift anyone could give another person: he believed in me.”

What Are Your Writing Triggers?

7 Apr

As I’ve said in previous writing posts, I’m a firm believer in “writing triggers,” or certain objects/locations/pictures/people who remind me of certain memories. Throughout writing my book, I’ve had to look for things to trigger certain memories of my childhood….or more specifically, the memories associated with physical therapy, Shriner’s, my CP, and just the different obstacles I’ve had to overcome.

Most people would naturally assume that my childhood home would be a pretty big trigger, but it’s not. Except for maybe the fearful times of attempted to get into the bathtub after my first surgery in 2003 and being terrified of my legs bending. See, I had just gotten out of wearing long-legs casts for eight weeks, and when your legs have been straight for that long, even minor movements could be painful. Anyway, my childhood home isn’t much of a writing trigger. I feel like most of my writing triggers have come from unlikely places…like seeing my knee immobilizers for the first time in years…driving past the places I’ve had physical therapy over the years…simply saying the word botox…or seeing Grace, an 11-year-old girl I know with CP, during her physical therapy sessions.

Over the past month, I have gone back and forth as to whether I want to go visit Shriner’s again, where I had all of my surgeries and intense physical therapy, and where I spent some solid chunks of my childhood. I haven’t been back in a number of years, and I remember how when we used to drive up to Shriner’s I used to get really nervous when we would take the White Horse Road exit, and then I’d get even more nervous when we were about 20 minutes away from the hospital. Knots would form in my stomach, and I’d look out the window and notice as much as I could….knowing that for the next few months my views would be confined to the walls of the hospital, despite the large amount of windows that didn’t give much of an “earthy view.”

Even though I think walking into the main lobby of Shriner’s wouldn’t have too much of an impact on me, I know that things would change when I’d go up to the second floor, and especially more so when I’d sit outside of the therapy room….realizing just how much pain a single room could hold. Part of me is thinking of waiting to visit Shriner’s until I’ve written the majority of my book because then I won’t have as much emotion aching to be released. I will have already released all of the really intense emotions. However, I am thinking of visiting once I finish my book to see if I could maybe give some type of talk to the kids there or try to sell my book to some of the families there.

I guess part of this writing process for me is channeling my pain and fear into something that can help others. I wish I would’ve had someone like me now to guide me as I was growing up…to show me that I was not alone…that what I was facing was painful and scary, but being reminded of the little things. Like how good it felt the first time I walked on my own, or what it felt like when I found my passion through writing, or the day that I realized I didn’t have to be defined solely by my Cerebral Palsy.