Thursday, September 27, 2012

CHATS WITH THE CHAIRMAN - Alan's Girlfriend

Amelia at her first Dance Your Dreams! class

Meet Amelia. She is currently 9-years-old, I think? I need to check her enrollment form to be sure - I know she’s been with our program for four years and was 6-years-old when she started, so I’m pretty sure she is about to turn 10-years-old - but I could be wrong. We have 40 children now in the 3-21 age group, who are active with us in our weekly arts education program, plus an additional 40 adults with disabilities - sometimes the details escape me.

When we met Amelia, Hayley and I were intimidated. Amelia was immobile at the time, she is non-verbal and she wears cochlear implants. While she appeared to be vigorously healthy, not frail like a few of our first students were, we didn’t know what we could teach her to do or how to go about teaching her without hurting her. She couldn’t speak, remember, so if we did some sort of stretch with her that was painful, how would we know we had hurt her if she couldn’t say “Oww!”? How would we be able to communicate what we wanted her to do if she couldn’t speak, couldn’t hear, and couldn’t do sign language because her fine motor skills are impaired by cerebral palsy?

Her mother, Brandy, is absolutely hands-down the most impressive young mom I’ve ever met, and that’s saying a lot given how much I admire and respect all of the parents in our programs. She has calmness about her; she radiates happiness and contentment every time I see her. When explaining Amelia’s limitations to us, she expressed no more concern than if she were telling us Amelia’s preference for what to have for snack; oh, but wait a minute, back then, we couldn’t even give Amelia a snack because the cerebral palsy made swallowing difficult for Amelia.

When Brandy explained this to us, four years ago, she told us that the swallowing issue caused Amelia to drool quite a bit and that if anyone found that distasteful, please let her know and she would send Amelia with a bib. Not only did it floor me that Brandy could tell us something about her child that is so devastating - she cannot swallow her food like the rest of us - but when she told us that, she was actually apologizing for the effect that had and was offering to correct it. She explained all of this to us in her sweet, upbeat voice with that big smile of hers that lights up her face - a smile framed by two adorable dimples - letting us know without saying it outright that she knows her daughter’s challenges might be hard for other people to handle, and that’s okay with Brandy. No judgment from her, no bitterness from her; nothing ever comes from Brandy but pure, unadulterated joy and love for life and for her precious family. When we met, four years ago, Amelia had a little brother; today, a little sister has joined the family - a precious little sprite who is always dressed in the cutest outfit and who loves to run around our lobby, playing games with the other siblings who are waiting in our lobby each week.

Now, when we started our first class way back in October 2008, my husband, Alan, had a hard time coming to watch the kids at first. Like many people, Alan’s first reaction was overwhelmingly emotional, and he literally couldn’t stay in the dance studio for more than a few minutes without his eyes welling with tears, his throat tightening, as the emotions swelled in his heart; emotions like admiration for the bravery and courage of the little children who were attempting to do things their little bodies couldn’t do and amazement at their achievements. Alan and I are both so humbled and grateful that we’ve been able to play a role in facilitating opportunities for our students and sometimes, we can both be overcome with pride that we’ve been able to do this and with regret that we can’t do more (or that we didn’t do this sooner and that we can’t do it bigger, etc.). Alan said he would get emotional for the same reasons you get emotional when you see someone accomplish a remarkable athletic feat or hear about an unbelievable act of bravery - because when you are presented with evidence of what truly amazing things human beings are able to achieve, it can be incredibly emotional.

Amelia after she performed at Panoply 2009
Because he didn’t want to have a complete breakdown in front of the parents, he would usually only stay in the dance studio for five minutes or so. But one day, he walked into the studio during that first class and Amelia twisted herself around in her wheelchair, reaching out for him. Alan approached her, leaned down and said, “Hi Amelia! How are you today?” She smiled at him - the biggest, slobberiest, most beautiful smile he had ever seen - and just like that, Alan was in love. Brandy told me later that she thinks the reason Amelia took to Alan so quickly and so forcefully was because she can hear the vibrations from men’s voices better than from women’s voices, but more than that, Brandy is convinced that Amelia knew without being told that Alan was the person responsible for making class available to her. Anyway, from that moment until today, when Amelia is in the building, she can recognize the tone of Alan’s voice as soon as he comes near her, breaks out into that beautiful smile and reaches out to him - only now, she can actually walk to him!

See, Amelia has moved out of her wheelchair to a walker, but when she’s at her dance class, we leave the walker against the wall - she doesn’t need it when she is wearing her leg braces and has her coach to support her. Amelia can walk now, something the doctors and therapists told Brandy would probably never happen. When she comes to Merrimack Hall, she heads straight for the elevator, pushes the button by herself, gets off in the dance studio, leaves her walker against the wall and goes straight to the ballet barre, where she knows her weekly lesson begins. Her favorite part of class is when they chasse, a particular ballet move, across the floor.

It was the chasse that was the first move Amelia did for us. Hayley happened to realize that if she faced Amelia and held her hands in front of her, as opposed to standing behind her and supporting her at the waist, Amelia could chasse - even though she couldn’t walk, she could execute the sideways steps of a chasse. When Amelia did this for the first time, every teenager and adult in the room screamed - out loud! Someone ran downstairs to get Brandy to come and watch. It was a pretty big day at Merrimack Hall, as we watched precious Amelia dance for the first time.

She’s getting bigger and stronger every day and walking is becoming easier for her. Brandy told me that Amelia’s physical therapist believes it is her involvement in our program that allowed Amelia to walk; I’m sure the extensive therapy she receives, plus the hands-on attention of her parents is the reason but her physical advances, but I bet our dance program hasn’t hurt! She loves to be on stage, smiling from ear-to-ear at the audience. She may not be able to hear their applause, but she can tell in the faces of those watching her that they approve of her performance. Alan loves all of our kids - he is especially close to the guys in Project UP - and knows some of our kids better than others simply because he’s not at Merrimack Hall every day. But his heart will always belong to Amelia. After all, she’s the one who taught him that there’s nothing to cry about when children are reaching their dreams.

Debra Jenkins, Chairman

3 comments:

Anonymous said...

It was amazing for me to read this inspirational story. my daughter has cerebral palsy also. It's pretty severe as well. I wish Amelia and her family the best of luck with everything. But I am curious on getting more info about your program. how would I do that?

Unknown said...

Thank you so much for your comment! To learn more about our programs, visit www.merrimackhall.com, or email me directly at jenkinsdebra@me.com. I would love to provide you with all the details of what we do!

Debra Jenkins, Founder
Merrimack Hall Performing Arts Center
Huntsville, Alabama

Teri said...

Hi Debra: Thank you so much for this blog. It was a little confusing to sign up so I could post a comment, & I just want you to know that is why there aren't many comments. Please don't let that discourage you from future blog entries. Believe me this has been all over facebook, with a lot of positive comments for your program. I am so grateful for all that you, Alan, Haley, & all of the volunteers you have helping these children & adults to have this wonderful opportunity to express themselves, build their self esteem & socialize. I also think it's a blessing for the volunteers. You are a blessing to all of them, their families & Huntsville! Thank you from the bottom of my heart. Teri McInerney (Amelia's Grammy)