I remember where I was sitting when my daughter told me that she wanted to do musical theater. She had seen me in a show a few months prior – yes, I had resurrected a hobby from my youth to perform in a local production of Annie – and somehow, after witnessing me in a show, in her mind, it became something she could do too.
My daughter can’t move. She has a tracheostomy and requires a ventilator to breathe, and requires regular suctioning because she cannot swallow. We half-jokingly refer to her wheelchair stroller as an “ICU on wheels” because it contains every possible machine needed to intervene in a moment of respiratory distress, every rescue medicine needed in case of a seizure, and even touts an oxygen tank for dire situations. This is how we roll.
My daughter is never left alone save for overnight, when she is a on a video and audio monitor. She can’t scratch her own itch or re-position herself and requires a caregiver to be within earshot at all times.
So you can imagine all the scenes running through my mind when she said she wanted to do a musical. “How is that going to work?” “A nurse would have to be onstage with her.” “What if she needs to be suctioned in the middle of a scene?” “Are stages even accessible? I’ve never paid attention to that.” And on, and on.
But I have learned something from my daughter – you can do WHATEVER YOU WANT – EVEN IF IT IS ONLY IN YOUR MIND.
So, I opened my mind to the possibilities and started making calls. About half a dozen theaters in, I connected with a director who operated a children’s theater in a neighboring city. He was open to the idea and suggested I bring her in her stroller to make sure she could get on the stage safely.
And, that was all it took. So far, she has done 5 shows with this theater company. Her nurses and I rotate who is on stage with her. And every time the auditions roll around, she wants the lead. She wants THE LEAD!!
Can you imagine the power of her imagination to even see that as a possibility?! And yet, every time she is told she got an ensemble role, she is so excited to just be a part of the show. Her grace in those moments is matched only by the sheer excitement she exudes on opening night, in costume and full make-up.
She openly shares how nervous she is to forget the choreography or the song lyrics. Yes, the choreography and song lyrics. (Remember, she cannot move.) The first time she told me that the choreography was “confusing,” I think my jaw dropped wide open. She’s doing it in her head. All of it. And it is bringing her the same level of joy that every other child on that stage is experiencing.
That’s what I mean when I say that we, and our children, and limitless. You are bound only by your imagination.
