Dancing In The Dark: Balancing life with special needs.

Dance. What a beautiful element of the world. You see it everywhere, the trees in the wind, the rhythm of traffic at stop lights, all around you there is movement, tempo and sound. Life is a dance, the routine in which you move. Well what if your rhythm was thrown off and you suddenly felt a loss of control. As a dancer my self I know you have one of two choices. You either realize these steps are not right and you panic, running off stage full of anxiety and embarrassment. Or you know that the show must go on and you just make up the steps as you go to finish out the music.

So what will your decision be when suddenly you have no control or clear knowledge of what steps to take next? This is what life feels like when you have a child with a disability. There are so many unknowns, the future is unclear. Not just the distant future but the near. Let me explain why I'm bringing this up. Today was the first time I got to watch my youngest daughter Ellie perform her competition dance in front of an audience. I was so excited and nervous, I had danced my whole life and then I also taught dance for many years. It was my entire existence. So of course having a daughter that wants to dance fills your heart with joy.

Before Ellie went on stage we were setting watching the other dancers perform before her, and it hit me. Madeline was not with us. She should be here. I should have watched Madeline dance before Ellie. Madeline loves dance. She loves music and movement. I put Madeline in dance when she was two, she was in my class that I taught. She wiggled around just like all the other little tiny two and three year old girls. After some time I changed professions and started working in the medical field, so I decided to put her back in dance, but this time I was not teaching. I would have dance teachers pulling me in the classes to help her and to keep her off the mirrors. They would say "she wont stop pulling other girls hair," "she won't stay in line", She wont stand up" or we don't have an assistant today.

This made it difficult to have her continue dancing. Being that I was a younger mom at the time I took the first option and I ran. I ran away from the anxiety and the heart break that came with Madeline not being able to participate in a dance class like other girls. It hurt me in that moment today knowing I didn't get to watch Madeline dance first. I could feel her need to be near me this morning when I was doing Ellie's hair and make up. She stuck herself to my arm to get my attention and I felt as though she was wishing that she could have her hair and make up done to. Even though I know her body doesn't tolerate those types of things.

This was the first year Ellie got to get back into dance. When I decided to stop sending Madeline, Ellie stopped going to. Now having a nonverbal daughter for so many years I had looked over the fact that Ellie can tell me what she wants. So for a whole year Ellie asked to go back to dance. Which was a difficult decision due to the fact that Madeline would want to go to. Would she feel left out if she saw Ellie getting to go to dance? These are the days when I wish Madeline could talk to me. This motherly guilt comes over you that you can't shake off. I only want the best for both of them. But how do you know for sure, if one of them can't tell you how they feel?

After Ellies performance we were driving home and all I could think about was how can I make that work for her. How can she participate? Could I take her to competition this year and see if she can be in the crowd of people? Will she walk through a large auditorium without setting down in the middle of the isle? How will she react to the other dancers, with glittery costumes and hair pieces? Will she have a meltdown while dancers are performing? If that happened, would I be able to give Ellie the attention she deserves in that moment? Will it be fun for her? or will it cause stress and anxiety? Could she maybe dance next year? Do I have her in a class with other girls or do a private lesson? Should she be with girls her age? or some maybe a bit younger?

These were not things I had to think about with Ellie. If she danced it would be her choice, and she would be in a class of girls her age. She would follow instruction and learn dance steps. Just like later in life I know she will have a boyfriend, or drive a car. She will get a job, move out and live her own life. I don't know how, when, where or with who. But it will happen. Weather I'm ready for it or not. I can only hope that Madeline can do all these things, but there is no guaranty. We have to make up the steps as we go.

For the past couple of years now I have been working on doing what I can to make this a reality for her. I have to be okay with not knowing, and let her try. It's the only way I will know what works and what doesn't. It's about the right time and place. But until then I will say to all the parents out there who struggle with the same challenges as these. This dance of life, if you will. Battling the unknown and having to make tough decisions. I will say, in the world of dance some of the best choreography comes from freestyle movement. No pre planned steps. No 5,6,7,8. No formation, No timing. The music just plays, and then... you move. How ever, and when ever you feel. And that can be a really beautiful thing. It's okay to not know all the steps, just dance.

---

If you enjoyed reading this blog, please join us next week for our weekly post. If you click the above right corner tab, then click blog. There are all the weekly posts you can read through. Follow us on TikTok @findingthepieces or you can email me at Findingthepieces25@gmail.com with questions or to share your story.

Meagan and Madeline