A Rare Girl

I’ve been working with Colleen for several years. At first I didn’t exactly knock it out of the park in terms of popularity. Although she doesn’t use words, Colleen has very effective methods of communication. In my case it was the growl and the grimace that she used to let me know that my music making was not cutting it with her. This went on for several months until I decided to growl back. This took Colleen by surprise and amused her. I took note and whenever she growled at me I would growl at her. I’m a very animated growler so I suppose I was entertaining Colleen despite myself and had somehow passed a “test” with her.

I was accepted into her world and I gradually became much more sensitive to that world… I discovered how rustling sounds from the kitchen at noon let Colleen know lunch is almost ready and she suddenly realizes she is hungry. I learned how wriggling in her wheelchair means her butt is hurting her and I need to adjust her seat. I learned that what at first sounded like moaning to me doesn’t mean Colleen is unhappy but, rather, that she feels like talking. I learned that she loves the way her dad rubs her cheeks and if I do the same I might get a big smile. I learned that Colleen likes John Denver and the sound of my mandolin. I learned that Colleen can become frustrated that I don’t always understand what she wants or needs and that a gentle touch and a quiet word from me lets her know that I am trying. Mostly I understand Colleen through her very expressive eyes. I can read her mood by the ways she looks at me… I can see contentment, anger, silliness, boredom… it is amazing how many shades of being Colleen can communicate if one learns how to read her eyes. I’m still learning, but I’ve come a long way from growls.

Colleen was born with Pallister-Killian syndrome, an extremely rare genetic condition. It is not inherited and occurs spontaneously by chance. Colleen is a very rare girl. She has different sides to her personality. She is determined when she swats away her hearing aids when they annoy her and when she tightens her lips and turns her head to avoid taking a drink. She’s funny when she lets loose a full mouthed yawn as if to say “Ho, hum… keep playing that uke, John… but I’m gonna nap.” Colleen is patient as I fuss over her. Colleen doesn’t suffer fools gladly – she has an ability to suss out when a person does or doesn’t “see” her, when a person is genuinely interested in meeting her or just sees a body in a wheelchair.

If you don’t tune in to Colleen, she’ll tune you out. I had to learn how to tune in to her wavelength. Colleen has a very loving and supportive family and a wonderful team of folks who give her assistance as she needs it. As quiet as she appears, Colleen wants to be in the center of the action, no matter how loud and busy. She is physically tough and brave when confronted with pain. I watched her spend over a month in the hospital fighting a respiratory infection, tubes all over the place and only once did I see a tear roll down her cheek.

Lately Colleen and I have been listening to a lot of Latin music which gives me the opportunity to play bongos and help her play egg shaker. I also like to push her in her wheelchair to the rhythm of samba and cha cha. I can put my uke in her lap and guide her hands over the strings; she has long nails and can really pluck! We’ve been discovering the virtual instruments in GarageBand on my iPad, especially the synthesizers. We can make all kinds of wild sounds as I help Colleen move her fingers over a virtual keyboard. When I make music with Colleen and she gives me a smile and I see a light in her eyes I feel like king of the world for the rest of the day. Colleen makes me work for that smile and it is my honor to do so.

Mystery girl with thoughts unseen.
Silent words, silent queen.
As you watch us silly people
Making all our silly noises,
Silly words in silly voices.
Hoping that you’ll smile at us,

~ John