I’ll wear it with Pride

“It looks like someone tried to chop your head off”, my father joked.

He was referring to the new scar on my neck. I’ve mentioned before in my blog that I have a a genetic disorder called Turner Syndrome. This condition can lead to a lot of complications, and one of those complications include issues with the thyroid gland. Blood tests were showing issues with my thyroid for a while. My doctor first decided to monitor the condition, but blood tests started to show that it was slowly getting worse and worse over time. She eventually suggested surgery. 

For those who are familiar with surgery procedures, I’m sure you already know that a lot of doctor appointments are involved to prepare a patient for surgery. Not only did I have an appointment to meet with the surgeon, I had a lot of appointments to make sure I was in good shape for surgery to begin with. It was definitely a stressful time, but I was just happy that my thyroid issue was being dealt with. I was so relieved, in fact, that there was no room in my mind to really think about the scar the surgery will leave.

After the surgery, my next priority was making sure I was getting rest in order to get better. Plus, there were bandages covering up the surgical scar. It wasn’t until about two weeks after the surgery when my doctor removed the bandage and stitches, but I didn’t see the scar until I reached home. 

“Awww. Now you’re gonna have a scar.”, one of my siblings said.

The healing process proved my sibling right of course. The surgical incision has healed pretty well, but it definitely left a scar. It also managed to form into a small, lumpy keloid that disturbs the otherwise smooth skin on my neck. However, my sibling’s lamentation over my scar is not what stuck with me during the healing process but her words right after:

“But I guess as people age and go through life signs of what they’ve been through start to show”.

Sometimes, what we’ve been through in life definitely does leave scars, whether physical or mental, and these scars tell our story. They are a reminder that we’ve been through some rough times, but we get through them, and that means we can weather through anything else that comes our way as well. This is how I’ve come to see my surgical scar. I thought I’d share this to give an idea of what’s been going on with me lately, and why I’ve been gone for a while. I also wanted to encourage anyone dealing with a rough situation right now that you will get through it even if it leaves a scar. Hope this post did the job, and I’ll see you in the next one! 

Joining Forces with World Supermoms: Embrace the Superhero in you

I am so excited to announce that I am collaborating with World Supermoms! With so many expectations on women and mothers, it can be difficult to be a woman! However, there is no such thing as the ideal woman or mother. World Supermoms is a nonprofit organization that uses their platform to help each mother and woman in general embrace what makes her special and unique. Recently, Supermoms reached out to me to republish one of my blog posts! That blog post is Imperfectly Perfect: My life with Turner Syndrome. This is perfect timing, since February happens to be Turner Syndrome Awareness Month! I am very proud of that post, and I am so honored that World Moms enjoyed it enough to republish it! If you haven’t taken a look at that post yet, visit World Supermoms to give it a look! Click here to read the post! Thank for this opportunity World Supermoms, and thankyou to my readers for visiting! Until next time! 

– Charli

Turner Syndrome and My Mental Health: A Second Helping

In a previous post, I mentioned that I have a condition called Turner Syndrome. For those unfamiliar with the condition, it is a genetic disorder when a girl is born with one of her X chromosomes partially or fully missing (boys generally have an x and y chromosome, while girls generally have two X chromosomes). 

The biggest issues with Turner Syndrome is that many girls with the condition are generally infertile, and can’t go through puberty on their own. They usually need hormone replacements. Turner Syndrome can lead to a host of other complications as well. Those complications can include problems with the heart, kidneys, bones, and thyroid gland. Complications vary from girl to girl. Each girl’s experience with the condition varies, and their symptoms can range from mild to severe. 

Girls with Turner syndrome can be diagnosed at any stage in life (before birth, at birth, during infancy, during their teenage, or during their adult years). Generally, the more severe the symptoms, the earlier a girl with Turner syndrome will be diagnosed. Most fetuses with the condition actually have symptoms that are so severe they never make it to term. Turner syndrome is a rare disorder that occurs in around 1 in 2,000 to 2,500 live female births. Around 99 of pregnancies where the fetus has Turner syndrome end in miscarriage.

I suppose that makes me a bit of a miracle baby, or so I like to think at times. I struggled with low self esteem growing up. I always saw nothing but my flaws, and the bullying and I went through during my time in school didn’t help. There was also the fact that I had disabilities and was very dependent on my family. I felt like a burden to them. No matter how hard I tried, I could never fully shake off those feelings, and I hated that. There would be times when someone would say or do something that would make me happy, or I would be doing an activity that would make me happy, but by the time I look around I’m back to feeling low. There would also be times when there was a reason I was down, and other times when I just couldn’t explain why I was feeling depressed. When I was a teen, I kept thinking that one day I will let those feelings go when I finally became an adult. I am now a fully grown adult, and still struggle a bit with these issues. I have learned that what I was going through was not just a phase, or something that I was easily going to get through.

Thankfully, I have a very supportive family. My family has been incredibly patient with me, and extremely supportive. To me, they have been like my therapists. They listen to my concerns, and even encourage me to open up. They never make me feel ashamed of my concerns or feelings when I do share them, and they never make me feel ashamed of my struggles. They also never make me feel like a burden. They are always making sure that I know I’m loved, and that I have a purpose and place in my family and in the world. Considering that I was blessed to be a part of the small one percent of fetuses so h Turner Syndrome to make it to term, I can’t help but to feel they are right. 

My mental health journey is still ongoing. I’m still finding myself, still growing. I’m still struggling with my self esteem. I don’t know why I was part of that small 1 percent, but I do know that I am willing to continue fighting through this crazy journey called “life” to find out.  After all, if there is one thing I know, it’s this: we are all here for a reason.

Note: My inspiration for this post was fellow blogger and disability advocate Amanda Gene, who is also very lucky to be alive today. Give her blog visit and read her story here.

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Imperfectly Perfect: Life with Turner Syndrome

“Do you wear bras?”, a high school classmate asked me one day.

“No…”, I replied with anticipation, waiting for her to get to the point. 

“You need to”, my classmate said, pointing at my “headlights”. 

That was during my last year in high school. Since I had just started showing signs of puberty that year, I did not see the need for a bra. Needless to say, however, after what my classmate told me, I never went out without a bra again. I was what one might call a “late bloomer”, or so I thought. During the summer before my first year in high school, I was diagnosed with Turner syndrome. Turner syndrome is a genetic disorder that affects girls. The condition is characterized by the partial or complete absence of one X chromosome. Many girls find out they have the condition around the same age I did, because one important marker of Turner syndrome is the absence of puberty. Girls with Turner syndrome generally can not go through puberty without hormone replacement treatment (which I started during my last year in high school). I always knew that I was different from my female peers. I finally found out why. 

When I hit my preteens I could not wait to transform into a beautiful swan. I watched all my female peers grow into beautiful young women, feeling more and more left behind with each passing year as I continued to show no signs of blooming. I couldn’t help thinking that I will always be an ugly duckling. I will never look like my female classmates, or the beautiful models I see on television or in magazines. My mother always tried to help me build a positive self image, but I just couldn’t let go of the feelings in my heart. 

Not only did I feel unattractive, I also felt incomplete. Women with Turner syndrome are usually infertile, and I was told by doctors that I was likely no exception to that rule. This revelation made me believe that I was not a “real” woman. I did not look like a “real” woman, and my body did not function like one either. It took some time for me to realize that there is so much more to a woman than her appearance. A woman is not defined by her breasts or hips, nor is an ample amount of them the mark of a beautiful woman. Beauty and women come in different forms. A woman who undergoes a mastectomy is not any less of a woman because of her lack of breasts. A woman who is infertile is not less of a woman because of her inability to bear children. I am not less of a woman because of some characteristics I lack due to Turner syndrome. Every woman is unique, but the one thing we have in common is that we all have our own special brand of beauty.

In a world where many people feel the need to get cosmetic surgery to “fix” what they see as imperfections, it is hard to be confidant and not feel the need to join the bandwagon. It takes strength to follow one’s own path instead of following the crowd, and over the years I have been slowly trying to build the strength to come into my own. I am learning to look past my “imperfections” so that whenever I look in the mirror I see a work of art