Today’s post comes from guest blogger, Amy Stout. Once again, her story of life with daughter Kylie, who experiences autism will tug at your heart strings. Prepare to be delighted by a dream come true for Kylie and her family.
Dance Without Limits, Part 1
A quiet hush fell over the room.
Families and friends adjust their camera lenses and prepare to capture the moment. The parents stand all in a line, each heart hammering in its chest- the sound: like thunder in their ears. Without consciously thinking about it, they hold their collective breath. The anticipation and fear of the unknown is enough to suffocate.
Mama Worries
My little girl stands in the center of the room, her tiny hand tucked into the very capable hand of her helper, and now friend, Maria. And yet, I worry that my fragile girl is scared, that she is nervous, that the crowd will frighten her.
In these last few moments, I desperately try to make eye contact with her. I need to know she is okay. She looks past me many times taking in the new scene before her – the new room, the number of people, the new costumes. Finally, her eyes rest on me – a sob catches in my throat.
I have to fight furiously to keep from spilling the tears that I feel welling up in my eyes.
Reliving the Past
The music begins and though the performance is only 3-5 minutes long, I find myself reliving the past 5 years.
I scroll through the day I learned she would be mine – the elation, the fear. I remember the day we first met – how fiercely I loved her and how I would die to protect her. I feel the pride we experienced when we introduced her to the world. I hear her baby voice as she cooed and giggled over the ceiling fan (fanny) and the chandelier (lumie). I recall her fascination with mirrors and how she held her head up so early. I remember how she practically skipped crawling altogether and “humped” to a walk – at 10 months. Always early in her milestones. Such a beautiful baby, she stood out from the beginning.
And then, I remember her struggle to sleep, the reflux that kept us homebound, the meltdowns, the anxiety, the rigidity, the organizing and lining up of toys, the inability to communicate.
And then, I feel the stares of all the people who didn’t understand our method of parenting, or who couldn’t fathom carrying a child out of a store kicking and screaming because the lights were too bright, the sounds too loud.
I relive the moments of sensory difficulty, her clinging to the door frame to avoid being immersed in water for a bath, blacking out rooms to sleep, hiding behind me because she was afraid of people, pleading with her to take just one bite of food.
The Weight of Diagnosis
I remember the fear when we learned she would experience autism – forever… How would that affect her life? How would it affect mine?
I feel the weight and pressure of knowing I would have to educate those around her and pave the way for people to accept and make accommodation for her – it feels so heavy. Can I do it? How will I do it?
How do I keep my sanity when every obstacle is in our path? How do I keep moving forward when every single step is a fight?
So many things fill my mind as I watch my girl…and the one thought that dominates over it all is that I am AMAZED.
My precious girl is out there, she is a fighter, she is a quick learner and she is trying. She feels like a princess and does her best to dance like her Maria.
All of this consumes me during her short performance – it seems impossible, but it is true.
We are so grateful to Dance Without Limits for giving Kylie this opportunity and experience. It is a dream come true – not only for her, but for us as well. We so did not want her to have to give up or miss out on typical little girl pleasures because of her sensitivities to light and sound, people, crowds and other factors.
Come Back Tomorrow
Did Amy’s descriptions make you break out in goosebumps? Then consider yourself in good company. And come back tomorrow to read the rest of the story and watch a slide show of Kylie’s fairy tale afternoon. In the meantime, check out Amy’s blog at www.histreasuredprincess.blogspot.com. Or leave a comment for Amy, Kylie or Ballet Des Moines.
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