coming clean.

My last post was July 24th, 2019. In that post I promised to be more open with all of you and to post more often, considering it’s now January 2020, I fell through on that promise. This time, however, I’m not going to apologize for not posting for six months. A lot of things happened between then and now that are really hard for me to share — things that are hard for me to even write about. This includes major things in my personal life and my health. How do you find words for feelings you don’t understand? How do you find words to describe events that you wish never happened? I’m having a really hard time finding the right words. 

I’m not going to share every little thing that happened in the last six months, but I do want to tell you about three important lessons I learned…

First, it’s really hard to heal emotionally when you can’t catch a break physically, and it’s a lot easier to put on a fake smile than to admit you’re breaking inside. In most of my previous posts, I mentioned my struggles with overcoming the emotional trauma my physical health has caused. Each time I think an emotional scar has healed, something happens with my health and those scars burst open. You add the traditional bumps and bruises that come with life to those scars, and suddenly you’re drowning. 

In John Greene’s The Fault in Our Stars, one of the characters says the thing about pain is that it demands to be felt. I didn’t think much of this the first time I read the book, but somehow nearly eight years later, it’s the one sentence from the novel that stands out the most to me. It feels like I’m in this never ending cycle between physical pain and emotional pain, and I can’t escape it — it demands to be felt. I’m learning how to cope, and each day is a little different, but what matters is I’m coping and doing it with a smile on my face because if I don’t smile, I’ll probably just cry. 

Second, there’s a fine line between having a chronic illness and being a hypochondriac, and it’s easier for people, sometimes even your friends, to label you as a hypochondriac than to attempt to understand what it’s like living with a chronic illness. I realized that people likely do this unintentionally. I can see it in the facial expressions of my friends and the weariness in their eyes. I can sense it in the texts that go unanswered or the events that I’m not invited to. I can feel it in the way that people change the subject when I spend more than a few minutes talking about my health. I don’t blame them, but I do think this has caused me to subconsciously isolate myself from my friends. Believe me, I’m tired of talking about my health, too. I would do anything to talk about the fun night out I had last weekend or the stress of the medical school application process, but I don’t get to experience any of those things right now because my health is overshadowing everything else in my life. 

This has weighed heavily on my heart for a while now. Not being able to do the same things as my peers makes me feel like a failure in many ways — as a student, as a friend, and even as a human being sometimes. I don’t want to dwell on those feelings anymore. By sharing this with you, I’m hoping that I can really start to let go and live more freely, even though my chronic illness is here to stay.   

Third, sometimes there is no positive lesson to be learned. Sometimes things are just really sucky, and there’s nothing you can do about it except push through and hope for better days. This has probably been the hardest thing for me to accept. I’ve always coped by seeing the positive in things and telling myself “everything happens for a reason and somehow good will come from this.” I spent the last 23 years trying to convince myself that I really believed that. I thought maybe if I said it enough, I’d really feel it. The truth is I don’t believe in this, and I’m okay with that. Sometimes things just suck. I don’t like to use that word but it’s true. Sometimes life isn’t fair, and it feels like you’re always getting the short end of the stick. In those moments, it’s okay to be sad or mad, to feel defeated and hopeless. I’ve learned to let myself feel those emotions, even though it sometimes makes me feel crazy. 

I know my last few posts haven’t been very positive or uplifting, but I’m beginning to recognize the importance of sharing these things. At some point in the last year, I started to let my chronic illness rule my life and define me as a person. I’m not sure when it happened. Maybe one day I woke up and it was written across my forehead, or maybe it happened gradually and with each obstacle thrown my way, I lost a little more of myself. Regardless of when or how it happened, I know that it happened and I’m committed to taking back charge of my life. I have so many things I want to accomplish and I’m determined to realize my dreams even if my health doesn’t get any better. 

With that being said, I’ve been working on a list of things I would like to do or start doing in 2020, and in my next post I’m going to share that list with you guys so you can help hold me accountable.

Thank you for standing by me and supporting me even though I keep writing about the same thing over and over again. Sometimes I feel lonely, and then I remember the incredible support system I have found in each of you and suddenly my heart is full again.

 

how to breathe when you want to give up

 by Cleo Wade

today I am breathing through fatigue, fear, and feeling overwhelmed. 

I breathe because when I breathe, I am reminded that I am alive.

I am reminded that to be able to fill my body with air means that I have the ability to keep going. 

I am reminded that my time on earth may be short but it can be powerful if I dedicate it to love and fairness.

when I breathe

I am reminded of Mary Oliver when she wrote,

“tell me, what is it you plan to do with your one wild and precious life?”

so I breathe

and let my breath

turn into a smile that says back to her,

“as much as I can.” 

A Turning Page

I’ve written many different blog posts over the last few months, but none of them felt like a finished product. As much as I wanted to share the events of the past few years with you, I’ve realized that I’m not ready to do that when I’m still processing it all myself. In the last two years, my world was flipped upside down and I’m still learning how to cope with that. It feels crazy to say that it has been two years since all of this has happened because to me it feels like yesterday. It has been two years since I was diagnosed with an obstructed kidney and one year since I had major surgery to fix the obstruction, yet every day I continue to deal with the physical and emotional repercussions of the initial diagnosis in August 2017.

I can’t help but reiterate the fact that this was the first time I felt my birth defect affected my day-to-day life. When you are born with a chronic illness you grow up with that as your normal, so you don’t really know any different. To this day, I still don’t really understand the magnitude of having to catheterize myself every three hours or having to do a nightly flush of my GI tract. I still don’t understand when people tell me I’m “strong” for living the life I live, especially now when recently I’ve felt more defeated and helpless than ever before.

Although this journey has brought many negative emotions with it, I can’t help but feel grateful for these experiences. I learned more about myself and this crazy life I live in the last two years than I did in my previous 20 years of living with my chronic illness. I now know the overwhelming feelings of fear and helplessness that so many people who lived with this before me have described. I learned that in those moments, I tend to shut off my emotions and put on a brave face, or I express those emotions instead in anger towards the people who are just trying to help make things easier for me — because I’d rather them think that I’m angry or frustrated with them than have them see how much pain I’m truly in. I also learned that in keeping those emotions bottled up, I made it a lot harder for myself to heal once the storm passed.

Learning to heal emotionally has been one of my toughest tasks but it has also been a beautiful experience for me. I lost sight of my hopes and dreams and felt like a prisoner in my own body, but today I am proud to say that I came out of this fight with a reenergized hope to make my dreams a reality and a passion to share my story with all of you. I’m still learning how to live with my new “normal,” but I’m ready to embrace it rather than let it bring me down. So from this point on, I’m going to post more often (I really mean it this time), both about my good days and the bad ones. I’m going to post about pursuing a career in medicine and all the times I’ve felt like I failed. I’m going to post about living at home as a 22-year-old post-grad and how frustrating it can be at times (sorry Mom and Dad). And I’m going to post about all the things I learn as I continue living with this chronic illness that I’m bound to for life.

 

“I may never be healed; but each day, I am healing.”

— Vironika Tugaleva, The Art of Talking to Yourself

five seconds of honesty

I’ve recently noticed that when I write blog posts, I tend to downplay the negative aspects of living with a chronic illness. My entire life, I have seen my birth defect as a positive and I will always believe that – without the experiences I have had as a result of my illness, I would be on a completely different path in life. However, in the last year I’ve realized the importance of taking time to recognize the negative side effects of being chronically ill. This is something that I have a very hard time doing. Over the last few months while I have been trying to write about what I went through this last year, I have found myself completely overwhelmed with emotions that I never even knew I felt in the first place. On some days, that emotion can be all-consuming. I think that in the moment my adrenaline was so high, and I was so determined to persevere, that I didn’t let myself fully recognize how my health was affecting me, both physically and emotionally. Now I’m taking time to reflect on every moment and it almost feels like I’m grieving. What surprises me most is that the memories bring about such intense emotions, as if it just happened yesterday. I remember the fear of being septic and barely being able to explain my birth defect to the ER doctors, and the defeat of being hospitalized every three weeks due to resistant kidney infections, to be told I needed a stent replacement and another PICC line for IV infusions. I remember the disappointment I felt when I had to miss my senior year NDA camp with the Dukettes, the football games I didn’t get to dance at, and the practices when I forced myself to dance even though the pain was excruciating because it was the only time I truly felt like I was in control, and oddly enough in those moments it was as if I was pain-free. There are so many little things that at the time seemed irrelevant but actually affected me more than I can say. And while I sometimes felt so alone, other times I had never felt more supported because of my family, friends, and mentors who helped me every step along the way.

I have felt emotions from every end of the spectrum and I have to be honest that I’m having a hard time expressing that. Had I let myself feel these emotions in the moment, would it be so hard now? I’m not sure. The one thing I do know is that I don’t regret any of the decisions I made, and I’d do it all again if I had to. I know that over time it will get easier, but I need to let myself heal and my first step in doing that is being honest with myself and those of you following my story. One of the reasons why I’ve had such a hard time sharing this with you all is that I feel like every blog post has to have an overarching positive lesson and this post focuses so much on negatives. What I have learned and what I hope to encourage you all to realize, whether you have a chronic illness yourself or you have a loved one who battles illness, is that sometimes life is tough, and you might feel defeated, but that is completely normal! It’s okay to admit to not being okay, and in acknowledging that you will find the strength to carry on.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’”

— Eleanor Roosevelt

twenty-two.

As I begin my twenty-second year in this world, I can’t help but be relieved for this past year to be over but am also incredibly excited to see what this next year holds. Twenty-one brought with it obstacles that I never thought I’d have to face. For the first time, my health greatly interfered with my life; every “sick” year before this pales in comparison to the last 13 months and I’d be lying if I said I didn’t take all of those years for granted. After nearly a dozen hospitalizations and numerous surgical procedures, I truly learned what it was like to have a critical chronic illness. I felt emotions that I’ve never before categorized with my health — fear, anger, defeat, sadness, and finally, acceptance. I had to change my lifestyle to cater to my illness and with my strong-willed (some may some stubborn) personality, this wasn’t easy for me to do.

While twenty-one was one of my toughest years, I can’t discredit the triumphs that also came with it. Despite my wavering health, I won my third national championship with the JMU Dukettes, completed my senior thesis that covered nearly three years of research with a fellow student, graduated cum laude from JMU, and was accepted into GW’s graduate program in anatomical and translational sciences. None of the hard times over the last year could overpower any of these accomplishments for me. I also know that none of this would’ve been possible if I didn’t have my incredible support system, which includes all of you reading this post.

I have been overwhelmed in the best way possible with all of the love and support I received over the last year. It is because of all of you that I am able to keep a smile on my face and continue to pursue my dreams. I have documented so much over the last 13 months — the good, the bad, and the ugly — and I plan on sharing all of that with you in a series of blog posts.

In my very first blog post, I compared life with a chronic illness to fighting an uphill battle. I have to admit that twenty-one was the first time I really had to fight that battle, but standing here starting my twenty-second trip around the sun, with so much hope and excitement for the future, I can confirm that the view from the top of this hill is truly amazing.

“Experience is the most brutal of teachers but you learn, my God, do you learn.”

   – C.S. Lewis

I Choose Love

In the past 24 hours, I have felt a wide range of emotions—excitement, anxiety, confusion, anger, sadness, and even fear. I have spent all day trying to understand how we could have elected a man like Donald Trump as our President, and I’m still not sure that I’ve accepted this fact. I am not able to understand how we have let hate into our lives and take over the love we all have in our hearts.

In this post, there will be no name-calling, I will not disrespect those who have chosen this fate for our nation, but I will try to make those people understand why, right here and right now, this fate terrifies me.

First, let me say that I have been conflicted this entire election. As a young adult who was getting the chance to vote for the first time, I was eager to finally be able to vote for a change in our country. However, rather than the respectable, exciting election I was expecting, I witnessed a controversial, hateful election that was painful to watch. This was incredibly disappointing and my excitement for this election slowly dwindled. Although both candidates had serious flaws, in the end I stood by the candidate that I thought had the best vision for America. I voted for someone who believes that the American dream is “big enough for everyone — for people of all races and religions, for men and women, for immigrants, for LGBT people, and people with disabilities.” I chose to not vote for a man who encouraged hatred and fighting throughout his campaign, a man who openly speaks of women like they are nothing more than a physical item. I chose to not vote for hate, but for love and equality.

Unfortunately, this election did not end the way I had hoped it would, the way many of us always thought it would. I think the hardest part is that I have friends and family who are scared to death of what this means for their future, and I am afraid too. I have friends whose family immigrated to America, who fear that their family will be separated. I have friends AND family  who are a part of the LGBTQ+ community that fear their rights will be taken away from them. As a woman, I fear that my rights will once again be diminished to close to nothing while Donald Trump is in office. I don’t need to justify these fears, Donald Trump’s words and actions are reason enough for us to feel this way. However, we will not let this fear undermine us and keep us quiet, we will use this fear to bring us back together. When faced with adversity, we fight until we have no fight left in us, and I know that this is exactly what we will do. We will continue to choose and fight for what we know is right, we will continue to choose love over hate.

“And we’ll rise up

High like the waves

We’ll rise up

In spite of the ache

We’ll rise up

And we’ll do it a thousand times again”

-Andra Day, Rise Up

https://www.youtube.com/watch?v=kNKu1uNBVkU

hello, again!

Once again, I have to start this blog out with an apology for taking so long to post. The past seven months have been jam-packed with some of the greatest times of my life and I cannot wait to share them with you guys! Between finishing my sophomore year at JMU, winning a second national championship with the Dukettes, being a part of my oldest sisters wedding, and spending my summer shadowing a few different surgeons, I’ve barely had any time to sit and complete a blog. I have so many amazing experiences to write about and I promise that I will be posting more often in the future. For now, though, I thought I’d share a milestone that I am very thankful to have celebrated this August.

August 15, 2016 not only marked my twentieth birthday, but it was also the day I was able to say I was officially ONE YEAR KIDNEY INFECTION FREE. To some this may not seem like such a big deal, but for my family and me this was something we thought I’d never be able to reach again. During my second semester freshman year we found out that I had become resistant to all oral antibiotics that could treat my infections. After some time in the hospital getting IV antibiotics, I was sent home with a PICC line so I could continue my medicine for another few weeks. Though I did get used to my Dad washing my hair in the kitchen sink and dancing with one arm, I was more than thrilled to have the line removed once the infection was gone. However, the damage had been done to my kidneys and I continued to fight off infections for the following months.

After new diagnoses and some advice from my favorite doctors at Cincinnati Children’s, I finally started to get a break from infections. Now I am proud to say that I am 13 months infection free. Trust me, there were many scares along the way, but I’m still infection free and incredibly thankful. This was the type of uphill battle I’ve mentioned before and I can once again say that the view from the top is as beautiful as ever.

This has been one of the first times that I’ve had a year where I haven’t been thrown a medical curve ball, and I can’t wait to keep sharing my experiences with you as they happen. I promise that there will be more posts very soon; I can’t thank everyone enough for reading my story.

to my beloved BAs…

First, I need to apologize for how long it has taken me to blog again… On December 19^th, I broke my hand while dancing in my room… of course I was jamming to a Taylor Swift song. Since then, I have had a hard time typing but I’ve finally gotten used to the feeling. Second, I had two different ideas for this post and one was supposed to be posted on Christmas Day as a little something for my family; however, I’ve decided to keep that to myself for a little while longer. Instead, this post is about seven girls who have become incredibly important to me in a very short period of time…

After joining groups on Facebook and reading through different posts, I’ve noticed that a common topic is friendships and how to decide whether or not to tell people about our birth defect. I know that everyone is different and some friends aren’t the best to confide in. However, from my experiences I’ve realized that telling all of my friends about my medical obstacles was one of the greatest decisions I could have made. I have never felt so loved and supported as I do now with all of my friends knowing everything and being there for me completely.

When I came to James Madison University, I was blessed to become a part of the official dance team, the Dukettes. I can honestly say that making this team has been one of the greatest things to happen to me. I have created more memories during my year and a half with my teammates than I did in the first 17 years of my life and I can never express how thankful I am for that.

More specifically, dance team introduced me to seven girls my age who have quickly become my best friends. I never thought it was possible for eight girls to come together and all get along; however, I can now say that it is 100% possible and it’s one of the most amazing things.

When talking about college with my parents, a question that always came up was “Are you going to tell people about your birth defect, how many people are you going to tell?” At the time, I said that I wasn’t going to tell many people, but that quickly changed after meeting the dance team. I remember the very first time I had to do my medical stuff around the team, which happened to be the second day I had met any of them, and they let me have my privacy but asked questions through the door and I was immediately comfortable with sharing everything with them. I’ve never actually expressed how amazing that was for me. I’ve never actually said how thankful I am for them giving me that experience. I’ve never actually told them how they are part of the reason why I am able to be so open about my health. They are the reason I am here today writing this blog, they are the reason I even started my blog in the first place— they gave me the confidence to let myself be vulnerable and I will forever be grateful.

During the 2016 snowpocalypse, all of the sophomores came to our apartment (five of us already live together) and we spent four days snowed in together. You would think that maybe we would get tired of each other, but we all ended up having the greatest time and I think we all genuinely missed each other when everyone went home. One of the nights, I found myself sitting back and looking around the room, looking at the girls who have given me the greatest two years of my life. In that moment, I realized how important every single one of them is to me and how without them, I would be nowhere close to where I am right now.

To my sophomores… thank you for always being there for me. Thank you for the times where we are all so stressed and just scream then sit and say one thing that we are looking forward to. Thank you for loving my toothless smile. Thank you for our pizza parties. Thank you for bringing me breakfast in bed after bad days. Thank you for having Thursday night dance parties with me.Thank you for letting me sing Taylor Swift and One Direction and Halsey at the top of my lungs (even though we all know I’m breaking each of your eardrums). Thank you for accepting me for all of my weird quirks. Thank you for being the greatest friends any girl could ever have.

 

dear taylor…

Those who know me know that I am a very proud, and loyal, Taylor Swift fan. For a very long time, I have been inspired by Taylor and her capability of staying true to herself. It is impossible for me to explain exactly how much Taylor has shaped who I am, but I hope that throughout this post you are able to gain a slight understanding of how much I admire the person Taylor is.

I have always been thankful for my anomaly, but just like any person, I have my insecurities. There are some days where I question the cards I have been dealt, but one time many years ago I heard something Taylor said, and to this day it has stuck to me and I remind myself of it every time I who I am: “you’re lucky enough to be different, never change.” That one phrase has become a life motto for me and I can’t thank Taylor enough for teaching me something that has made me appreciate my uniqueness in ways I never imagined were possible.

To give some context on how much Taylor has helped me in just about every aspect of my life, I thought that I’d share some of her songs and how they relate to my life… When I think of how thankful I am for all of my best friends, I think of “I’m Only Me When I’m With You.” When my sister found her first love, we sang her “Hey Stephen (insert boy’s name).” And to this day, I sing my younger friends “Fifteen” whenever they get into high school. When one of my sisters and I shared a room and we would argue, when she locked me out I’d sit outside the door and sing “Mean” (we still laugh about this today). When I had my first crush, I danced around my room and belted out “Enchanted.” When someone close to me lost her best friend and spiraled into a hole of bad decisions, I sang her “Innocent.” And this past April when I danced on a nationals stage one last time with my sister (the same one I sang “Mean” to all those years ago) we sang “Long Live” and cried while reminiscing on all of the great times we had dancing together. I sing “Ours” once a week as a reminder that when you sing “I love the gap between your teeth” you are in fact singing a lyric for me because of the tooth that I have missing right in the front of my smile. My favorite song to dance around the kitchen to is “Holy Ground.” My sister and I sing “All Too Well” together to remember her first love and how it changed us all. I am always singing “You Are In Love” because to me that song describes love in the most perfect way (even though I have never been in love). I can honestly say that “New Romantics” is my favorite Thursday night dance party jam. And “Shake It Off” reminds me to always love myself for who I am and to never let anyone else change me. One last song that I think will always be the most influential and memorable, for me, is “Fearless.” This is the song that got me accepted into college because I wrote my application essay on its inspiring lyrics, this is the song that I have painted across my walls, this is the song that taught me to take chances, to be fearless because sometimes FIVE SECONDS OF FEARLESSNESS can change your whole entire life. While this is only a handful of Taylor’s songs, I think that they are a strong representation of how each of her songs can give a message that represents any moment in my life.

I hope that one day I can share this with Taylor and thank her for how much she has unknowingly changed me; even if that day never comes, I will always be thankful to have been inspired by her and all she has done. I’ve written all of this as an attempt to show why I look up to Taylor, and I hope that some of you are able to understand how influential someone like Taylor can be—it’s not because she’s “famous,” it’s because of how she has used her popularity to show others that being true to who you are is one of the greatest gifts you can give yourself.

a special thanks…

Since my last blog post, I have been questioning what my next post should be about. While I had many ideas, I couldn’t decide on the best next chapter for this story I’m sharing with you all. In the past week many different signs have pointed me in this direction and with Thanksgiving being yesterday, I thought nothing could be better than giving thanks to a person who I feel I will never be able to thank enough, Dr. Alberto Pena. At nine months old, I was fortunate to become one of Dr. Pena’s patients. He performed a PSARP and many other reconstructive surgeries on me, which changed the direction of my life.

Knowing that Dr. Pena has done all of this for me, I have always been incredibly grateful for him. In seventh grade, I reached out and sent Dr. Pena an email (from my dancginstarrr123 email, might I add) thanking him for all that he has done. I admit that I have gone back and read our email chain and laughed at my poor attempts at thanking him in a mature and professional way, but knowing that he took the time to respond to an email from a 12 year-old patient he hadn’t seen in nearly four years still means the world to me. Similarly, when I was in eighth grade, I wrote an essay on why I thought Dr. Pena should be one of CNN’s Top 100 people in the world. I sent him an email asking him why he became a pediatric surgeon. His response, which I will save forever, read: “A pediatric surgeon cannot change the history of the world, yet we have the unique opportunity to make a difference in the quality of life of a little girl… Also, a pediatric surgeon is very privileged because there is a chance that one day he receives a message from one of his patients, a lovely girl that selects him as one of the best 100 people in the world.”

Dr. Pena’s story has always moved me. I can say with utmost confidence that the biggest reason I am a pre-med student is because of how inspired I have been by Dr. Pena and his work. He is motivated by the proposition that “it is not the unanswered questions, but rather the unquestioned answers that one must pursue.” His dedication to his profession made the life I now live possible, and I hope one day to have the same impact on the lives of others. Whenever I am having a hard time studying (which is more often than not because of organic chemistry), I think of what Dr. Pena told me in his email to my eighth grade self, or I catch a glimpse of the rainbow fish pin the colorectal center gives out, and I remember why I have chosen this course for my life and how blessed I am to even be able to do what I do today.

While I am incredibly sad to hear that Dr. Pena will no longer be at Cincinnati Children’s, I will never forget all that he has done for my family. I will forever be honored to say that I experienced firsthand the difference one dedicated doctor such as Dr. Pena can make in the lives of so many people. I will forever be thankful for him.

The First Five Seconds

Before I really start this blog, I feel like I need to give some background information on who I am and what my life has been like these past nineteen years. Some things have been impossibly hard to put into words, and other things are incredibly scary for me to finally share, but that’s the point of Five Seconds of Fearlessness. With that being said, here’s my first five seconds …

One in 25,000. Those are the odds of being born with a birth defect known as a cloacal malformation, a congenital fusion of the urinary, digestive and reproductive systems that occurs while a baby girl is developing in the womb. I came into the world as one of those statistical anomalies. In layman’s terms, the pipes going into my body worked fine, but the pipes leading out were a jumbled mess. After more than a dozen reconstructive surgeries, I am now able to live what outwardly appears to be a normal life; however, my life is anything but normal and the experiences I have had as a result of my anatomical uniqueness have shaped the person I am today.

While I am blessed in that my disability is hidden from view, that veil of privacy is also a curse because most people have no idea what it means to be me. Sometimes I think being me is like running a marathon while carrying a 100lb weight on my shoulders—it can be done if I’m truly determined, but it takes a lot more effort to get to the finish line. Determination has never been something I’ve found myself lacking; however, I can honestly say that sometimes I struggle with why— why was I given so many obstacles, why did that higher power think that I was strong enough to handle all of this? Why was I given a life that always seems to be an uphill battle? The answer… the view from the top of that hill is completely worth the struggle. Every time I find myself asking these questions, I remember that every single thing that has happened to me has only made me stronger—and I mean this in the least cliche way possible. The things that I’ve experienced as a result of my anatomical uniqueness have given me a life that I would never ask to be different, a life that I will forever be grateful for.

Not only has my birth defect given me a unique appreciation of life, it has allowed me to meet some of the most remarkable people. I have been fortunate enough to get to know other girls with the same malformation, yet every single one of our stories is completely different because, although we share a diagnosis, none of us have the same side effects, we all have our own journey to share. One of the reasons why I started this blog was for these girls. I decided to share my story in hopes of other girls reading this and knowing that our diagnosis is something that has only made our lives more beautiful.

One in 25,000. Those odds defined the beginning of my life, but neither they nor my birth defect will keep me from living life on my terms. They can’t stop me from being a normal nineteen year old college student. They can’t make me live a life in fear of what the next obstacle may be. One thing they can and have done… they’ve given me a story. An unfinished story that I will continue to share with you as it is written.