When you become pregnant, you immediately start to gather hopes and dreams for your child's future. Karina, my second-oldest daughter of five, was born two months early and from that moment on, has always shown that she does things on her time and with all eyes on her. Since the first moments home from the NICU, the only way we could get her to sleep was music. Her eyes would grow wide and you could see that every beat, rhythm, and word was being taken into her tiny little brain. Music quickly became her escape, her way to be free in her body however the music took her.
Diagnosis: Cerebral Palsy
Karina Marie Hill was born at 32 weeks after a high-risk pregnancy resulting in her premature entry into this world on November 2nd, 2011. She was a very happy baby despite her month-long stay in the NICU attached to feeding tubes, IVs, and heart monitors. When she was discharged from the hospital, she seemed to be on track with her developmental milestones until she was about six months old. Her pediatrician's checkups were very positive and assuring that she was doing great. I didn't feel that everything was great. My mommy instincts said something was wrong. She couldn't bring her head up for tummy time, her fists were balled so tightly, and her nails dug into her soft fragile palms. The first time I heard the cerebral palsy warnings on the TV, my heart sank. My brain began to put my daily realities all together. "Does my child have cerebral palsy?" I went with my gut and took Karina, eight months old, to be evaluated by a neurologist who quickly did an MRI brain scan. My life as a mother changed on October 10th, 2012. "Your instincts were right, Karina has what we call cerebral palsy." What that meant for her future, no one could tell us. But Karina would soon show us.
Karina is now six-and-a-half years old, and since around three she has been very interested in dance shows, videos, and competitions. "Mommy, I want to do a solo dance on stage!" Karina cannot stand and uses a wheelchair to get around most of the time. I had looked into wheelchair dance classes and nothing was anywhere near our small upstate town. I reached out to doctors and other moms to see if maybe I was missing something. There were no camps or dance classes that Karina would fit in with her chair.
As I did my research I found a few local dance studios within a few miles from our home. The heartbreak of my child begging me to let her join a dance class wore on my hear and mind daily. I was never able to explain the reasoning behind my repetitive answer of "I will look into it, OK sweetie?" With no mention of it again until she would ask again a few days later. One day I decided to just call to see if a wheelchair could even be considered in their very competitive dance classes. I didn't want anyone to think that Karina was going to slow them down. I had to think about the fact that she couldn't use her legs for the dance routines, and was the building itself even accessible for her chair (this has become a much bigger problem than any mother would have imagined for her child)?
Blazing Our Own Trail
I came across The Next Jennarations Dance Studio in Lansing, New York. The woman who answered the phone was very warm and openly listened to what seemed to be a very far-fetched request at the time. "My daughter is six years old and would love to join your hip-hop dance class, she is however in a wheelchair..." She gently asked me what her abilities were within her chair. Can she stand? Can she use her arms? I explained that Karina could independently push herself in her chair but could not get in and out of it independently. Her CP mainly affected her legs, but she could use her arms and hands. I explained that I wasn't looking for someone to take on any of the physical transfer needs and I would stay at the studio to help during the class. She suggested that maybe Karina come in on the first day and try it out! I was so excited to tell Karina the news, but I was still worrying. What if it doesn't work out? Could I be getting her hopes up just for another disappointment in life?
I had no idea what to expect. I wasn't into dance when I was younger and had never stepped foot into a dance studio. On the first day of hip-hop class, with Karina bouncing with joy in her bright pink chair, we entered the dance studio. Many children stared, which was expected. I'm sure people wondered how she was going to dance if she couldn't use her legs. We met the woman I spoke to on the phone and also the dance class teacher who were both so warm, caring, and sensitive to my worries. I wheeled Karina into the dance class where about 15 other students sat on the floor waiting for class to begin. I asked Karina if she wanted to stay sitting in her chair or wanted to sit on the floor like everyone else. She wanted to sit like everyone else, so I quickly transferred her to the floor. I tried to not to make it seem too obvious to the other children, as Karina was very conscientious of being looked at as "a baby" and didn't want me around her because she was a big girl like everyone else in the room. I explained to her that I had to stay to transfer her back into her chair when they were getting ready to dance. The dance teacher quickly came over and said she was totally comfortable with lifting her up and putting her back into her chair if I was okay with it. Karina was attached to my hip, I was frozen with surprise and happiness, yet sadness that my girl didn't need me to be there during this new adventure.
Pulling Off the Big Performances
There was one big worry that I had to still get sorted out now that classes were going beyond what I had expected. The big dance recital at the end of the year! This is what every girl and boy lives for, what they work so hard practicing all year for. Of course Karina wanted to be a part of this opportunity. Again, I had to step back and ask questions that should be an obvious 'yes,' but still aren't, even in 2018. Is the stage at the State Theater where they would be performing their dance routine accessible? The answer was no: the building wasn't accessible, the stage wasn't accessible, and the bathrooms weren't accessible. Again, my heart broke for my little girl whose only dream was to be on stage, to be that star she always wanted to be, with all eyes on her. With little discussion, the staff at The Next Jennaration was there by my side ready to help accommodate lifting Karina and her chair to the stage, assuring she had a place to stay in between routines and continuously asking if we were all set.
Karina completed her first year of dance class in a non-wheelchair dance class and studio, and if I hadn't just taken that leap and called to ask, she never would have had this amazing experience. She helped so many people around her understand the world of accessibility and inclusion. The Next Jennaration dance studio now has a special needs dance course they are offering for those who want to learn dance but may not feel comfortable in the fast pace dance classes they otherwise offer.
It only takes one person to speak up, to make a phone call, to request information, for a change to be made. I've found that unless you are living it daily, no one around you is even thinking about it. Awareness is key, and can make all the difference for those around you.
About the Author
My name is Chelsea Hill. I am a wife and mom of five beautiful girls. I am an accessibility and inclusion activist whose hope is to make this world more accessible and free for my daughter before she gets old enough to head out into the world on her own. I am a full-time student at SUNY Empire State College and will be completing my Bachelor degree in human resources this December.