The song that said it all…

We all have that one song in our heads. It’s the lyrics you can relate to; it brings back memories and basically sums up everything you’ve experienced in life.

For me, that song is “Wonder” by Natalie Merchant. I remember hearing it on the radio years ago and my mom saying listen – this is you!

Originally, Merchant wrote this song after having worked at a day camp for special needs children. She noticed a girl who seemed to have so many physical and other health issues, and thus wrote “Wonder”, about how this girl never stopped and overcame it all.

So, I listened to the song, and it’s been my theme ever since. I was always very sick as a baby, and fought through so many infections and other health issues as well. Sometimes I look back and think man, I don’t know how I’m still here! There’s a line in the song that reads like this: Fate smiled and destiny laughed as she came to my cradle. Know this child will be able.

I still find those words to be so true. Things were very hard then, but it’s all different now! Doctors had told my family things were not looking good for me growing up, but I’ve worked extremely hard, from birth, to prove them wrong.

I’m forever grateful to have been given the opportunities that I have been given in this life. I have learned, especially from this music, to never take it all for granted. Like the song also says; with love, with patience, and with faith, I’ll make my way. ❤

Turner’s Syndrome: What can you do if you’re a “not-so-social” butterfly?

Alrighty all. I wanted to jump on and talk a bit more about a topic that, as I’m sure you can tell, pops up a lot when discussing TS. I’ve said before that these girls and women  can often have social anxiety as well as other social difficulties. Hopefully I can help give some insight into how you can manage these issues and come out of that cocoon, so to speak. ☺

First of all, I want to say that feeling this way is ok. Sometimes it can be hard to find people that relate to you, or understand what it is you’re going through. I always say that it takes time to get to know me, and really appreciate everyone being so patient with me!

I’ll tell you a bit more about how things were growing up. I’m the middle child, and was always the happy, smiley, talkative one in the family! I’ve also talked about how I was usually the one to be very “out-there”, at first. I got a little older and started to quiet down; I became a bit more introverted than usual (my sister & I reversed roles, basically). So, I then needed to figure out how I could open back up again.

To this day, I still am pretty darn shy at times, but I’ve found ways to put myself out there and be more social, especially while at school. It’s so important to push yourself, and do whatever’s possible to break that shell. I’ve learned to absolutely love trying and experiencing new things that I wouldn’t dream of doing in the past. I try to do more public speaking or talking. When I’m with my friends, it’s easier now for me to just be my weird, quirky, “funny” self.  ☺

I like to talk about these things a lot now because it’s kind of like a journey that you have to take day-by-day. It’ll only get better if you keep working at it.

So, for any TS gals reading, believe me, I know it’s hard, but you’ll get there! Try doing things like making doctors appointments for yourself (if you’re of age), or if you’re taking the GH – learn to give those injections on your own. Trust me, I know these things can be kind of scary, but it’ll help so much in the end.

This all goes for others too, not just women and girls with TS. It takes time, but just do the best you can each day and you’ll see how comfortable you can be in your own skin. ❤

Making those lemons into lemonade…

Sometimes I’m asked why and how I can be so open about something like TS. To be honest, I only have one real answer to that: it’s the life I was given! You know the saying “when life gives you lemons, make lemonade”? That’s basically what I’m going for, here.

 

Life can put you in some pretty scary situations. You might need time to breathe and adjust if and when this happens, but that’s normal. The difficult times and rough roads are only going to make you a lot stronger, happier, and healthier in mind and body, too.

 

I chose to open up more about Turner’s syndrome because it’s  a part of my life, and it’s something I knew I could use to make a difference. I knew how alone I might feel if I didn’t step up and say hey; there’s gotta be something I can do about all this! Thus colleenjoyce.net was born. 😁

Never in my life did I think I would ever be able to become so open about this piece of who I am. However, it’s all taught me so much. You can either take something like this and hide it, or bring it out there and show your true colors. There are going to be people that do accept this, and there will be those that don’t. This goes for any similar situations in life, because trust me I know, they’re there. So, when it does come to that, just remember that you do know you better than anybody else. You’re not wrong for being you, and nobody can change you, either. Your life is your life; make that lemonade as sweet or as sour as you want it. 😊

 

 

For the long haul…

I’ve  had a lot of inspiration to get this one down, so I hope you get something out of it too.

I’ve begun sharing my website more with other friends, classmates, and professors at school. It’s made me think a lot more about why I want to get into the career path that I do. I actually started college as a nursing major, but after one tough  semester I realized that it wouldn’t help me stay on the correct track anyway. So, that’s why I switched to Health & Wellness (major props to my nursing major buddies though; you guys rock 😄).

 

As a Health/Wellness major, I opened myself up to more opportunities and choices in terms of becoming a Genetics Counselor. Going to grad school is not something I had expected, honestly, but I know it’ll be worth it! Right now it’s just a question of when and where after I graduate.

I’ve thought about how cool it would be for a family or parents to sit down with me, and know that I had gone through a very similar experience to their child. Now I’m no expert, believe me, but if I was brought a case concerning a girl with Turner’s syndrome?! I would do whatever I could to show the family or parents that their child was going to be fine.

As of right now, I’ll have beaten the odds almost 21 years ago (only about 2% of baby girls with TS survive). For as long as I’m on this Earth, I want to do what I can to “pay it forward”, if you will. It sounds kind of crazy, but I really do feel as though I was given this life for a very specific reason. I might’ve found that out the hard way, but I’m ready to take it all on, because I’m in it for the long haul. 😊