I Keep the Hope

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| This is the 212th story of Our Life Logs |


April 26, 2003, was the night of Katie’s senior prom, but instead of dancing, she spent the night in the hospital bringing me into the world. My birth parents, Katie and Taylor, were only 17 at the time, so, after staying with me for two nights, Taylor carried me from the hospital room to meet my new parents, Jay and Julie Vonesh. That day, I became part of two families.

Since I was very little, my parents talked to me about what it meant to be adopted, about how special it was, and my birth mother has remained a part of my life. While sometimes bittersweet, I’ve always felt supported on all sides.

Janae with her family
My adoptive family and me (I’m in the middle).

I grew up in Colorado, in a little town called Bailey in the mountains. My parents encouraged my sister and me to be active and follow our interests. Thankfully, I found my niche at the beginning of my journey.

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I began dancing when I was just three years old at Terpsichore Studio. My teacher, Patricia Dugan, showed me how strong dancers could be before I even understood strength. When I was 11 years old, Patricia was diagnosed with cancer and closed her studio in July of 2016. Her passing was difficult for me and for the other students because of how many of us she inspired. She kindled a love of dancing within me that quickly became my passion and part of my story.

When Terpsichore Studio closed, I began dancing at Peak Academy and switched schools to study the global arts as a dancer at Summit Education. I was all in. Dancing was all I ever wanted to do! My new teacher Hannah helped me learn to dance with my emotions. She and my classmates at Summit and Peak Academy became my third family. We held each other to high standards and supported each other’s dreams—and my dreams got big. What if I could be a professional dancer? What if it was possible?

My teacher Hannah taught me that dance can be used as a form of expression and identity—and when I practiced with this new mindset, it felt effortless. I felt like I could unlock the door to what had been bottled up inside me. So that’s what I did for years. I worked hard in practice and in competitions to pursue the hopes for my future in dancing. I didn’t want anything else!

Unfortunately, what I wanted was beyond my control.

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In 2016, I started getting constant headaches and spent days in pain. At first, I thought it would just go away—maybe it was just growing pains or maybe I needed to rest more. But it didn’t. It just kept going and going. This tiredness was different than what I felt after dancing or hiking. This was a constant fatigue. Something was really wrong.

My parents and I began seeing various doctors to try and find a diagnosis. Different offices, different faces, but all shared the same confusion. No one was sure what was causing me so much pain. All the while, I just wanted to go back to dancing. Since we didn’t have an answer, I tried my best to go back to my normal life.

But the way I felt made it hard to be normal. I kept dancing—I wanted to keep dancing—but the exhaustion forced me to spend less and less time in the studio. It was hard because I was so worn-out, but couldn’t explain why. All I ever wanted to do was to dance, but it began to feel impossible. Not only this, but also it became difficult to maintain friendships because I couldn’t be as involved as I wanted to with other teenagers. What was going on?

Months passed like a rainy day. But just when I would get down on my situation, my family was always there to reassure me that they would be there to support me. The never ending “I-Love-You’s” didn’t make me feel any less exhausted, but they did make me happy. My family didn’t let me waste away, either. We took awesome camping trips, and even if they had to wait on me to catch my breath, I never felt like I was a burden. Slowly, life went on.

Janae and her family on the river, 2017
Me and my family on the river trip (I’m on the far right).

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In November 2017, they finally put a name to the problems I’d been having. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Basically, it’s an autonomic nervous system dysfunction, meaning the parts of my body that are supposed to work automatically, don’t. At the time, I wasn’t sure what that meant. All I knew was my exhaustion had a name. I didn’t know the extent of the illness and the effects it would have on my life. I also didn’t know that it would become a chronic illness. Most importantly, I didn’t know if I would be able to dance again.

POTS affects every part of my life. I don’t have any energy, so I have to carefully manage my time to avoid exhausting myself. I go to sleep by 8:30 pm at the latest, and even then, I am always tired. I can’t do normal, day-to-day activities, and I deal with nausea and digestive issues. I have trouble sleeping, and I have almost constant pain. It’s difficult to balance spending time with my family, my friends, and my birth family while keeping the countless doctor’s appointments. Even still, I try my best to work around these challenges and take medical steps to help manage it.

Why? Because, why not?

I have friends and family who love me and support me beyond measure. My friends listen when I am struggling, but also encourage me to never give up or stop looking forward. I’ve learned the value of community and the power of love. I want my life and my dancing to reflect that love and to make the world a little bit better. Through my various treatments and appointments, I’ve met several other teens with POTS and it is an inspiring community. I want to make a difference and I want to bring awareness to chronic illness.

Janae with her friends in the hospital, 2017
Two of my friends visiting me in the hospital.

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No matter what happens, I keep the hope that one day I’ll be able to dance again like I used to. I want to find ways to make dance a central aspect of my life even with these barriers. I also know that I want to help people.

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Practicing dance through physical therapy.

 

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This is the story of Janae Vonesh

Janae currently lives in Colorado with her family. Janae grew up with two families because she was part of an open adoption at birth, and from those families she has received immense love and support in her life that eventually translated into dancing. When Janae was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in 2017, her dreams of dancing were dashed, but she is determined to dance again through the help of medication and physical therapy.  Janae has been dancing since 2006, first at Terpsichore Studio in Bailey and then at Peak Academy of Dance in Conifer. She studies at Summit Education. Janae is still fighting to manage her symptoms and looking for ways to continue dancing and helping others with her illness. Thanks to the love and support she has received all her life, she is positive that she will find a way to live the life she always planned even with her illness. Janae loves hiking and being outdoors. She loves to mix her two passions by photographing herself dancing in nature.

Janae and her friend Audrey dancing at the hospital
Janae and her friend Audrey dancing at the hospital.

 

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This story first touched our hearts on August 1, 2018.

| Writer: Cailey Johanna| Editor: Colleen Walker |

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