Turner’s Syndrome and Motherhood

Alright, so this is a topic I’ve only just begun to explore a bit more now that I’m older, and I figured I’d give you some more of my thoughts on it.

 

Yes, at times I do get pretty depressed over the thought
that I’ll never have my own biological child, but there’s a lot I’ve had to learn.

I think a lot of TS women who are also infertile seem to think that because of this, they’ll never have a chance at all to be a mother. This really upsets me in that these girls should not be made to think like that!

As I always say, girls with TS are not, and should not be considered any different than others around them, and this includes the want to become a mother.
There are many options available, including IVF, adoption, and even foster care. We can work to figure out which option is best for us when the time is right.

Another little bit from my childhood that my mother loves to retell is me talking about how exactly I’d start my family. I used to say how it didn’t matter to me how I would, but that I actually would is what mattered. ❤

 

 

 

 

Not flesh of my flesh

Nor bone of my bone,
But still miraculously my own.
Never forget for a single minute,
You didn’t grow under my heart
But in it.

– Fleur Conkling Heyliger

Something “tall” and strong…

As a woman with Turner’s syndrome, I know what it’s like to be looked-down upon. Oftentimes it’s the short stature(thank you growth hormones 😊) and the way I tend to look younger than I actually am that causes people to be thinking differently.

It can be hard to look past the “oh…you’re actually 20?!”, or “I always thought you were the younger sister!”, but I’ve learned that that’s just how life is! I obviously can’t do too much about my age or why I look the way I do.

 

TS girls can sometimes be seen as too small, or too weak, and this bothers me. We often have to work hard to be considered stronger, or maybe even healthier. I don’t think this should be the case. Girls with TS might be a little different, but they’re also just the same as everyone else out there. Wearing an estrogen patch does not mean I’m nothing like the woman standing next to me!

 

Instead of sticking to the whole stereotype of “smaller, weaker than most”, I’d rather be considered as someone who has a personality that makes her “taller”, or stronger. That’s another reason why I love to do what I do. If I can help give these girls that confidence-boost, then that makes me feel very good! ❤

“If you think you are too small to make a difference, try sleeping with a mosquito.” – Dalai Lama XIV

Turning The Tables on Turner’s Syndrome

I often hear or see stories with girls and women with TS saying that they wish TS didn’t exist, or it didn’t happen to them. I thought it was about time to set the record straight and say this: you should really think about that the next time you want to say it.

I don’t want this to come off harsh; it’s just how I’m feeling. To be honest, I have had my days of why me, why this; it took time for me to get over all of that and start thinking hey – I wouldn’t be in the position I am today if I hadn’t decided to get up and do something about it all. As I’ve said, it wasn’t going to help much if I just sat there and complained.

 

I had to work very hard as a younger girl, and built up the want to get awareness out there; I decided that I would do everything I could to sort of “turn the tables” on TS. I felt that too many of these girls and women were left unsure, or they just were never able to fully understand what was happening.

Nowadays, I’ve thought long and hard about what to do to solve these issues. Why can’t we just put more effort into explaining that although TS is TS, it can still be treated somehow? I just don’t feel as though parents and families need the extra stress or wonder when it comes to figuring out how to help their daughter sister, or friend with a diagnosis.

 

Let’s think of it this way: a diagnosis of TS does not mean the end of the world. Let’s show these girls that no matter what, there is a purpose to this life! We can face these challenges head-on and end the thought of TS as a death sentence. Believe it or not, TS helped me gain a lot of my new-found confidence.  It helped me learn to put myself out there, and explore everything there is to offer when it comes to helping other girls and women dealing with the same issues. Had it not been for TS, I never would have thought of going to school to become a genetics counselor, which is my next plan on this crazy journey. 🙂
As always – we are strong and capable of anything.

 

“Life is very interesting… in the end, some of your greatest pains, become your greatest strengths.” ~ Drew Barrymore
❤

To See Me at Three…

So I recently had a midterm assignment for one of my classes. We had to write a letter to our 11 year old selves about puberty and cognitive development; what were some things we wish we’d known or thought about?

It got me thinking. If I could go back and talk to my 3 year old self about her diagnosis of Turner syndrome, what would I tell her, knowing what I know now? I thought I’d do this for those moms of baby girls newly diagnosed as well, so hopefully this helps.

I guess I would start by telling her that she’s in for a pretty wild ride, but she would be just fine. The GH injections might hurt like heck at times, but they’re only gonna help in the long run! Ear infections can be a pain too, but she’s tough enough to handle them. Surgery every once in a while, to get ear tubes, would help keep them in check (haven’t had to do this for a very long time 😮).

School would be difficult, especially math (ugh – I still hate it 😝), but teachers would always be willing to work with her. There’s nothing wrong with getting a little bit of extra help!

I’m sure she’d have something to say about wanting kids of her own. This is where I’d tell her that although she may not be able to have children on her own someday, she’d still make a fabulous mother. She has so many options, including adopting and foster care. Any child would be lucky to call her mom.

I would tell her to keep fighting and
keep working hard as she grew up, no matter what. Nothing and nobody is going to stop her.

“There is no greater agony than bearing an untold story inside you.” ❤ ~ Maya Angelou

It’s not all about X’s and O’s…

…seriously. That might be what my genotype is (45XO), but there’s more to it than that.

I could talk all day about learning to love yourself, and accepting why you are the way that you are. The idea here is that girls with TS often have a lot of trouble with self-esteem. They just don’t see themselves in the way that others do. This comes with somewhat of an anxiety. Sometimes girls with TS tend to ask themselves questions like, what will he or she think of me? Do they not understand why I act a certain way? What’s wrong with looking a bit younger than I actually am?

To be honest, I struggled with body image issues for a long time. I never enjoyed doing things like getting my hair fixed or dressing up. It wasn’t until my freshman/sophomore year in college that I told myself I had to get a grip and start caring more. The important thing is too, though, that I also had to tell myself personality matters soooo much more than appearance.

I was definitely so much more outgoing when I was younger. I grew up, and it was as if it all disappeared, in a way. I got to be more quiet; I didn’t really like to talk much. It look a lot for me to be able to work on this, as social skills are another issue that some TS women can struggle with. Overall, I think I’ve gotten to be a lot better when it comes to handling these problems. I do what I can to put myself out there and make sure I can connect with people. It does help to know I’m surrounded by a lot of awesome family and friends; I’ll never be able to thank you guys enough, because you’re all just too awesome. 😊

So, what I’m trying to get at here is this. It’s not all about the X’s and O’s (although it does just mean I’m full of hugs & kisses, right?!). What it’s really about is the amazing personality on the inside. For any of you TS girls that struggle with these issues, I want you to know something. You’re here for a reason. You can show others that it really is what’s on the inside that matters. ❤

Lady Gaga said it best…

Lady Gaga said it best. No matter what, you were still born this way. Along with being yourself and not letting certain aspects of life get to you, you just have to go on and accept who you are. Don’t let anybody make you feel like you don’t matter, and don’t let anybody try to change you.

Yes, I have Turner’s syndrome, but to be honest, I wouldn’t have it any other way. I always say that had I not started the website, I would never have been able to meet so many amazing girls, women, and families that find themselves struggling with the same diagnosis.

I’ve learned that I can’t feel sorry for myself. This is just how life is, and there isn’t anything I can do about it. Like I’ve said – why bother complaining about these issues when I can take it all and turn it into a positive? I’ve felt as though this is all my true calling. Not only can I use this to help other girls and women with TS, but I can also show others how to look on that bright side and keep a healthy, positive attitude about life.

 

I’m a Community Health and Wellness major in school; health and wellness is something I’ve focused on for a while, really, and it’s become very important to me. It was the summer after my freshman year (I’m finishing junior year now 😮) when I decided to take my health much more seriously. I was done just “letting it all go”.  So, that summer I began using things like Jillian Michaels and Tony Horton work-out DVDs. I was weight training and running, too, thanks to my crazy marathoner of a mother 😝😊. Anyways, I knew I didn’t want to get too crazy with it; it was all just to make sure I stay healthy, in shape, and happy! Needless to say, I still do what I can today to make sure I stay this way, especially with the heart issues that come with having TS.

 

Overall, I know what I’m here to do, and I’m not afraid to say that this is who I am. I was born this way. ❤

“It doesn’t define you…”

Alright;

I had some thoughts and wanted to go off my last point about being true to who you are, and just seeing how wonderful it can be to let others in on your story. This is kind of like a “part-two” to explain my new outlook on things.

While it’s amazing and so important to embrace your uniqueness, it’s also important to realize that certain things about you or your life shouldn’t define you. These are only a small part of the insanely awesome, wonderful person you are!

When I was diagnosed with Turner’s syndrome at 3 years old, I’m sure the only thoughts my parents had going through their heads were things like “how will she be able to live like this?”, or “will her life really be any different than that of her brother or sister?”.

So, I got older, and the realization hit me that hey; I might have a longer medical history and tons more papers in my files with the doctor, but that certainly doesn’t make me any different than my siblings, and it certainly doesn’t take away from the woman I am today.

It will take me some time to adjust to certain aspects of life now at almost 21, like the infertility for example, but I find the saying that everything happens for a reason to be very true. I know what my options are, and who knows what could happen years from now?

I could easily sit around and complain about these issues, but why bother doing that when I could just enjoy the life I was given? I’ve learned how important it is to keep that positive outlook, and move forward. I could take something like this, and use it for the better, not worse.

When I was 18, I got a tattoo. It’s a butterfly (the symbol for TS) with my initials written inside. It sits on my right side, over the spot where my ovary is. This was how I decided I would acknowledge this part of my life. I’m saying that I know it’s there, and it might be tough, but I have the ability and strength to overcome this challenge. It’s only a small part of the happy, smart, hardworking woman I’ve worked to become. Do you see where I’m going with this?

Another piece of advice I can give to any other girls with TS is this: you are so much more than those growth hormone shots and estrogen pills. You are strong, fabulous, and best of all..you are YOU! 🙂

I might’ve been born with Turner’s syndrome, but Turner’s syndrome doesn’t define me. ❤