Special Performance of Nutcracker Brings Holiday Magic
by Kristen Wilsey
When you have a child with NGLY1 deficiency or any special needs, it can sometimes be a challenge to maintain holiday traditions. Growing up, each year as Christmas approached, my family would attend the local ballet for a performance of the Nutcracker. This was always a highlight for me. We would dress up in our Christmas best and spend an afternoon mesmerized by the talented dancers, enchanting story, and beautiful sets.
In 2016, I took Grace to our town’s local Nutcracker performance. She absolutely loved it. She was enthralled by the dancing, music, and sets as much as I was as a child, but Grace also “sang” and “danced” along in her own way while sitting in her wheelchair. For people not familiar with non-verbal children with a neurological disease, this can look like shouting and uncontrollable outbursts of movement. While I have come to recognize this as her expression of pure joy, others in the audience viewed it as very disruptive. After attempting to quiet her down by giving her snacks, milk, and a chewy toy, the glances from the other adults in the audience were too much for me to bear. Holding back tears while standing in the foyer, a kind woman approached me and asked how she could help. She quickly whisked me and Grace to an upper level where she thought we could view the show with less disruption. This lasted about 5 minutes as Grace’s joy once again shone through and her noise was just too loud for a regular audience. I asked the woman if there was ever a dress rehearsal we could attend, and she said she would look into it.
This year, when I saw the email for the Menlowe Ballet’s It’s a Wonderful Nutcracker, I inquired about the chance to view a dress rehearsal. I received a call later that day from the special angel I had met 2 years prior. Little did I know that her name is Julie Lowe and she is the Associate Artistic Director for the performance. Julie shared with me the impact Grace had on her in 2016 and that she was inspired to open the show to an abbreviated, sensory-sensitive performance called the “Suite Nutcracker”. I had no idea Grace had left such a mark on Julie. This Sunday, along with several hundred other special needs adults and children, we were able to attend the 45 minute performance. Grace experienced the ballet in her entirely authentic Grace fashion…dancing and singing loudly to Tchaikovsky’s Dance of the Sugar Plum Fairy. There was no explaining or attempts at quieting Grace. Everyone in that audience accepted Grace and the others without question. Thank you Menlowe Ballet and Julie Lowe for your incredibly thoughtful, generous spirit. We will always be grateful to all of you for allowing our special needs family to continue this holiday tradition and will forever remember meeting the cast backstage. We hope other performing arts centers follow Menlowe Ballet’s lead and offer a special performance for those people who are unique.