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.