I Appreciate the LIttle Victories by Chandler Isom

Hi there! My name is Chandler Isom. I am a 22 year-old college student, aspiring teacher, daughter, sister, friend, dancer (for fun), and I have Turner syndrome (TS). I was diagnosed at eighteen months old. My parents and doctors noticed my constant fussiness and some developmental signs that concerned them. After a lot of testing, I was diagnosed.

I would not change the fact that I have Turner syndrome, even if I could. To quote my parents: " Turner syndrome is a small part of who you are, but it is a part of what makes you, you!" This phrase has stuck with me for years and is something I now live by. My life would not be my life without TS. I would be lying, however, if I said I was always this positive about my condition.

When I was younger, it was hard to find the joy in TS because it was so overwhelming. I was on growth hormone shots for ten years, appointments every four months, bloodwork, x-rays, etc. School was hard academically, and I often felt like no one besides my family understood what I was going through. Even though I was surrounded by amazing family members, two of my best friends who also have TS, I felt lonely. I was having to make decisions no one else my age was having to make. For example, having to decide if I wanted to freeze my eggs at thirteen years old. I was still a kid having to face the realization I may not have kids of my own. I was angry that I even had to think about a decision like that and overwhelmed by the information being given to me. It was an isolating experience, even though I had the support of my family. Not many thirteen-year-olds must make decisions like that.

This leads me into my first piece of advice. If you are someone who has TS and you ever feel alone, I highly encourage you to lean on trusted family, friends, and the TS community. If you care for someone with Tuner Syndrome, I encourage you to remind them that they are not alone and give space to listen. That’s what my parents did for me. They told me we are a team, and I was not alone, even though it was just me going through it.

I am so grateful for my parents and brother; they were and still are my rock in hard times. I am never alone in life because they are always there for me, and oh my goodness, am I lucky to have them. Now that I am a little more grown up and some time has passed, my perspective about my TS and having kids has changed. Many years from now, when I am ready and if I am fortunate enough, I can adopt children. If I am blessed enough to adopt, I will have the privilege to be a mom and raise a child, and I am so looking forward to doing that someday in the future.

I have come to see Turner Syndrome as a small part of me, but not all of me. I appreciate the little victories in life so much more, for instance, driving on a highway. I drove on a busy highway by myself successfully the other day! While that is an everyday thing to most, if you know about Tuner Syndrome, then you know how hard driving can be for some of us due to visual-spatial issues. I can drive a lot around my college town, to my volunteering, classes, and places I need to go! (If you ask any of my roommates, they will tell you my parking needs some work though, haha!).

I think it is pretty cool that Turner Syndrome has allowed me to be grateful for little things. As far as what I am up to these days, I am Senior Early Childhood Education major. I just finished a semester-long practicum in December and am getting ready to student teach this Fall. I did my practicum with third graders, and I absolutely loved it! I taught a few lessons on my own for the first time. It felt amazing. I was very far from perfect, but I did it! I got to know the most incredible, hardworking group of students, and could actually relate very personally to struggles they had with learning. Working with students makes me happy. I am not entirely sure what grade I want to teach, but I really enjoyed third grade. I recently started getting back into dance (I tried a swing dance class for the first time the other week and I had a blast.

I never would have thought any of this would be possible. I always thought I was not smart enough for college or that I would not make any friends. I am so glad that I was wrong. Just now, if you have TS and like me are nervous for what your life may entail when you get older, just know you are not alone in that feeling. Also know that you can be successful in college, it just may take a lot of hard work, but you can do it!

It took me a while to adjust to college, and I had to advocate for myself with professors, but I love it and I have incredible friends. They never make me feel bad for my struggles, they just support and encourage me, as I support and encourage them. I still have some bad days with TS as we all do, but I am happy, and my health is good right now! I see my doctors as recommended to stay on top of my health.

I am so grateful for my life because I know the chances of me being here on earth were so little. I will end with this: I hope every young girl with TS reading this knows that your life is a literal miracle. I hope you know you’re beautiful, amazing, and have so much to offer the world. You are capable of fulfilling your passions and dreams. Everyone with TS has a choice to make, to live the best life you can with TS. Some days will be hard, and trust me, I understand there are days of pain and loneliness. If you keep up with health screenings, have patience with yourself, and advocate for your needs, you can lead a wonderful life with Turner Syndrome. Lastly, I believe in you wholeheartedly.