Tag Archives: My Life

The good things about surgery.

24 Oct

What doctors don’t emphasize too much when it comes to surgery is that the actual surgery is the easy part. It’s the intense physical therapy afterwards that kills you. That being said, surgery is still a very scary procedure. Through all 3 of my intense surgeries, I was scared every time. Before each surgery, I had nightmares about waking up during surgery and seeing the doctors putting their hands inside my legs to straighten out my femurs. In my nightmares, I couldn’t speak. I remember screaming as loud as I could to try to alert the doctors that I was awake, but nothing worked. The doctors were too focused on straightening out my crooked femurs to pay attention to the traumatized girl on the operating table. However, thankfully, all of this was a dream. That doesn’t mean that it felt any less real though. I remember countless times when I woke up from this particular nightmare screaming and struggling to look at my legs to make sure they weren’t split open to expose my bones.

Despite the decent amount of fear and uncertainty that accompanied the intense surgeries I had, there were some pluses. First off, before each surgery, I got the autograph of the head surgeon. However, not in the sense that he signed a picture of himself and gave it to me. He signed my legs though. I later learned that he had to sign my legs so that he would be sure to do the correct procedure on the correct patient, and I definitely think that’s important. I didn’t want my femoral derotational osteotomy to be confused with a sex change. However, in my opinion, it’s more fun just to imagine the head surgeon wanting to give me his autograph.

Since the surgeries I had were incredibly intense, I was placed in the ICU following each operation. Though the groggy feeling and getting sick from anesthesia wasn’t fun at all, I had an epidural. Therefore, the pain wasn’t nearly as bad as it would be once the epidural was removed. Also, even though I slept a lot while I was in the ICU, when I was awake and finally ready for food (or when I could enjoy it without getting sick), I got to have as much ice cream and chicken noodle soup as a wanted. I even remember one particular time when I got my dad to go to the Chick-fil-A that was in another part of the hospital so that I could have some chicken nuggets and waffle fries. Though Chick-fil-A is normally incredibly yummy anyway, it was 100 times better after a huge operation. Trust me.

Most people don’t really think of presents when they think of surgery. However, they are connected, especially when you have your operations in a children’s hospital like I did. When I was younger (before all of my surgeries), I never quite understood why people received flowers and other gifts when they were in the hospital because, to me, the flowers didn’t really do much when they didn’t also include sunshine, birds, blue skies and everything else that’s connected with the outdoors. However, when I was in the hospital following my surgeries, the flowers were a comfort. Though it was hard to accept that I couldn’t just go sit outside and look up at the clouds, the flowers were the closest thing I had to being outside, and at that point, I’d take anything I could get. However, besides flowers, I also received tons of “Get Well Soon” cards and all sorts of presents from family, friends, friends of my family and pretty much anyone else who cared about me and wanted me to know that they were thinking of me. Though I don’t remember specific flowers or specific cards that I received, I do remember getting a stuffed animal hippo from my horseback riding teacher, Miss Mary. Though I ended up accumulating many stuffed animals throughout the time I spent at Shriner’s, my hippo is the one that is still very close to my heart since I got him after my very first surgery. He’s been with me through it all (including college), and I know that it will stay that way for quite a while.

Though I don’t recall having any incredibly good-looking doctors like the “doctors” on Grey’s Anatomy, I do remember Ben, one of the physical therapists at Shriner’s that I had a huge crush on. He had red hair, freckles and the cutest smile I’ve ever seen. Even though he wasn’t my physical therapist for an extended period of time, he did spend a few months with me while my regular physical therapist, Beth, was on maternity leave. Even now, it seemed close to perfect that part of my time with Ben coincided with Valentine’s Day. Even in the hospital when you’re feeling all kids of emotional and physical pain, it’s possible to have a crush. Trust me, I proved that. As you can imagine, when Ben gave me a heart-shaped box of chocolates on Valentine’s Day, I was over the moon. I think I may have even squealed a little bit when he handed me the box of chocolates. After all, it was one of the first times in my life that someone other than my dad was my valentine. Although, since I never had Ben as my valentine a second time, I think it was a good decision to stick to having my dad as my valentine from then on.

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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.

Writing advice from Maya Angelou.

28 Jul

“There is no greater agony than bearing an untold story inside you.” 

This quote has hit home for me recently, and yet I know that I’m doing something that not many people can do: I’m attempting to get my life on paper. At this point, that’s all that matters to me, the fact that I’m trying. Even though I was worried for a while that I haven’t even touched my memoir in what seems like ages, I’m okay with where I stand. As many people have told me over the past few months: the words will come when they are ready. I’m sticking to that thought. At least for now.

Two Years Ago…

27 May

Yesterday I went to Salem Academy (the boarding school that I graduated from in 2010) to see the Class of 2012 graduate. I had a few really good friends who were graduating, and graduation is always a great way to see fellow Salem Sisters who have also graduated. My best friend Skidmore, who graduated from Salem in 2009, came to the graduation too, and I loved seeing her.

As I was sitting in the audience watching the Class of 2012 graduate, it surprised me to think that 2 years had already gone by since I was sitting down in the May Dell in a white cap and gown getting ready to embark on a new phase in my life: college. I remember my graduation day so perfectly, as if it was yesterday. I was so excited, and yet I was also incredibly, incredibly sad. I wasn’t ready to leave the one place where I finally had felt like I belonged only to have to start over again. I didn’t want to leave behind the friends I had made or the faculty and staff who had shown me what it meant to truly follow my heart and chase my dreams. And yet, I was excited for what college would bring. I was anxious to be in a new place with all new people who would all be on their own path of self discovery. I was happy to be done with the grueling academics of Salem, but knew in my heart that without them, I wouldn’t have been as prepared for college as I felt at that moment.

As I sat in the May Dell in my cap and gown, looking up at the all girls’ boarding school that was founded before the United States achieved independence, I was proud. I was proud to be part of another group of women who, though leaving Salem, would continue to think back on Salem in the years to come, relishing in the wonderful memories that shaped our lives. On that day 2 years ago, I was happy. I didn’t think that I would cry until I looked up to see my mom crying. However, in that single moment, all the sadness of what I was leaving behind hit me. But as I shaded my eyes from the sun and listened to girls from my class speak about their fond memories of this place, I let the tears fall. I cried knowing that the young women who stood around me would always be in my heart, even though we were all about to head off to colleges at far ends of the country, and even far ends of the world. And at the end of that day, I left Salem knowing that I’d be back to visit and that I had made some of the best memories and friends that I could have ever imagined.

When the graduation of the Class of 2012 was over, I felt a strange sense of deja vu. It took me a moment to realize that it wasn’t my graduation day, but the graduation of a class that I first got to know as freshmen during my first year at Salem, my junior year. Though it felt sad to see them leave the place that will always be home for me in my heart, I’m happy to know that one of my friends from the Class of 2012 will be heading to Asheville in the fall. It will be so exciting to have a fellow Salem Sister with me once again. Someone to explore Asheville with and talk about Salem with, and most of all, someone to create new memories with, even though both of us know that the memories that will forever bind us are those that were created in a place in North Carolina that I was able to call home for 2 years of my life. However, with my friend coming to UNCA in the fall, it’s as if something incredible has happened: Salem has become both my past and my present.

The Summer of the Lightning Bugs.

18 May

When I was growing up, summertime in the mountains of Saluda, North Carolina, meant catching lightning bugs after dark. To some they are known as fireflies, but ever since I’ve been coming to the mountains since I was a kid, I have always called them lightning bugs.

When the summer nights rolled around, I’d go into my grandmother’s kitchen in her mountain house and find a jar for lightning bugs, which often turned out to be easier said than done considering all the different things that could be found in my grandmother’s kitchen. Though it would seem like finding a jar for lightning bugs was easy, in my grandmother’s kitchen, the one thing you were looking for was often the one thing that you couldn’t seem to find. Most of the time I just used a regular mason jar and then poked holes in the lid using a knife. That way the lightning bugs couldn’t escape, but it would still allow them to stay alive.

Catching lightning bugs is a lot like looking for shark’s teeth or pieces of sea glass on the beach. You’ve got to let your eyes adjust to your surroundings before you can focus on your goal. When searching for lightning bugs, that goal is a flicker of a greenish-yellow light that can be found anywhere from the right of an old tree trunk or to the left of your hand that’s clutching the mason jar, waiting for the moment when you can open the lid and put your treasures inside.

When I first started catching lightning bugs, the only thing I really understood was that I had to wait until it got dark to catch the bugs that light up when you cup them in your hands. In those days, my mom or dad would come along with me to hold the jar so that I could focus fully on spotting the lightning bugs. Once I caught one, my mom or dad would be right behind me with the lid already open so I could put the lightning bug inside. Sometimes, however, I’d get tricked. I’d think that I caught a lightning bug, but then I’d open my hands a little bit to place it inside the jar, but my hands would be empty. Even though I got frustrated when that happened, I’d turn back around and keep looking for the green flicker that was my sole connection to warm summer nights in the mountains.

Even when I got old enough to carry the mason jar and look for lightning bugs by myself, the experience held the same excitement as the early days. I’d eat my dinner as fast as I could, and then my eyes would dart from the window to my one of my parents, eager for the go-ahead that I could go outside to catch lightning bugs. When I reached the age where I didn’t have to have one of my parents go with me, I developed my favorite spots around my grandmother’s house to catch lightning bugs. My favorite spot was the “mini garden” right above my grandparents’ house that had 3 bushes in a row, flowers dotted all around, and a bench off to the side of the grassy area. This was one of my favorite spots because even though it was part of the yard, it seemed secluded in its own way. Plus, since it was a grassy area rather than gravel or pavement, I could comfortably sit down on the ground and look at the lightning bugs that I had caught. For me, the evening of catching lightning bugs was over when I was tired and yet completely content. I didn’t base the length of time that I was outside on how many lightning bugs I caught. If I did that, I probably would have stayed outside until my parents would have to come get me for bed. I never cared how many lightning bugs I was able to catch. As long as I had one, I was happy.

For me, one of my favorite parts of catching lightning bugs was after the whole experience outside was over. Then, I’d get to curl up in bed and place the jar of lightning bugs on my bedside table. When my mom or dad would turn out the lights, I’d star at the green flicker in the jar that meant life, looking at the simple insect that had the power to hold my childhood concentrate for hours outside. And after one last look at my lightning bug treasures, I’d roll over and let the hum of the cicadas rock me to sleep, anxiously awaiting the next evening to arrive so that I could once again, however briefly, catch a little bit of magic.

Saving Max by Antoinette van Heugten: More Than Just A Book Review.

16 May

A few days ago I finished my fourth pleasure reading of the summer, Saving Max by Antoinette van Heugten. This book was an amazing read, and I simply couldn’t put it down. Here is the synopsis according to Amazon,com:

Max Parkman—autistic and whip-smart, emotionally fragile and aggressive—is perfect in his mother’s eyes. Until he’s accused of murder.

Attorney Danielle Parkman knows her teenage son Max’s behavior has been getting worse—using drugs and lashing out. But she can’t accept the diagnosis she receives at a top-notch adolescent psychiatric facility that her son is deeply disturbed. Dangerous.

Until she finds Max, unconscious and bloodied, beside a patient who has been brutally stabbed to death.

Trapped in a world of doubt and fear, barred from contacting Max, Danielle clings to the belief that her son is innocent. But has she, too, lost touch with reality? Is her son really a killer?

With the justice system bearing down on them, Danielle steels herself to discover the truth, no matter what it is. She’ll do whatever it takes to find the killer and to save her son from being destroyed by a system that’s all too eager to convict him.

I connected most with the character of Danielle, Max’s mother. Even though there were certain times when I didn’t approve of some of her choices, ultimately she did what any good mother of a special needs child would do, she fought for him. For me, reading this book reminded me of all the people who have fought for me as I was growing up and throughout my life due to my Cerebral Palsy. Whether it was making sure that I was placed in the same classes as other kids my age in middle school or making sure I could get a single dorm room in college or be able to register for college classes early so I could make sure the classroom buildings weren’t too far apart in between back-to-back classes, I’ve always had people fighting for me. When I was growing up, and even now, that person has been my mom. It took me a long time to realize that her tough love was her way of fighting like hell for me to get the same opportunities as all the other kids my age. Nowadays, one of my previous physical therapists, Meredith, has acted as my biggest advocate in terms of getting a single room for college, etc. However, the strong realization over the past year is that I’m reaching an age where I have to be my own advocate, or at least figure out who the person is that I need to talk to in order to get a certain thing done, has been a little scary. Though I understand that it is because I’m getting older and I have to “take the reins” in a sense, I’ve always had others fighting for me. Though I know that they won’t go away simply because I start being my own advocate, when I was growing up, I was my own fighter in a different way. I fought to get up in the morning and not instantly start crying because of the pain that came so suddenly. I fought to try to keep a smile on my face because I knew that if I didn’t I would just break down. I fought to ignore all the stares, even when I would have liked to just scream at those kids that would walk by with their mouth gaping open, and who would turn around and look at me more even after their mothers had walked them past me already. I fought, every single day, and I still do. And I’ll fight to be my own advocate. It’s just been interesting to realize that I have to switch gears, while also realizing that I’m just fighting for what I have always deserved: the same opportunities that other kids my age have been given.

That being said, read this book. It’s amazing.