...and they all lived happily ever after...

...and they all lived happily ever after...

Friday, April 21, 2017

Two girls, one disability, and something much more

Aubrey is 15.  She is interested in clothes, and musicals, and boys (oh my, is she ever interested in boys).

In most ways, she is just your typical teenager.  Except for maybe one thing.

Every Thursday for more than two years, this book-loving, fashion-forward, boy-crazy adolescent girl has scurried out of her dance class and rushed to spend the rest of the evening with her disabled cousin.

Becca is 10 years old and was born with Rett Syndrome, a rare genetic disorder that has left her unable to talk, walk, or control her body.  She spends much of her time in a wheelchair and expresses herself through an augmentative communication program called CoughDrop using just her eyes (which pretty much rocks).

Every Thursday, Aubrey forgoes sporting events and sleepovers in favor of feeding tubes and medications. Instead of texting with her friends, she gives piano concerts to an audience of one.  And she smiles the whole time.

Because Aubrey and Becca have a secret.  Despite the difference in age and ability, these two girls are fabulous friends.
It didn’t start that way.  Sure, they loved each other from the get-go — they are cousins, after all.  But this arrangement started out as a way for Aubrey to learn how to take care of Becca so that when her parents needed a babysitter there would be someone available who understood all of Becca’s needs.

You see, they couldn’t leave Becca with just anyone.  They needed a caregiver who knew how to feed their daughter through her g-tube, how to help her clear the mucous that sometimes builds up in her throat,  how to move her safely from place to place, how to give her the medicines she needs, how to recognize her discomfort and pain, and how to treat her like a person, not a problem.

Enter my teenage daughter.

Aubrey quickly learned all the logistical requirements of caring for her cousin, but then something happened that went much deeper.  Aubrey and Becca connected.

Becca is comfortable with Aubrey.  She tells her things like her favorite color, what happened at school, or what she feels about life in general.  Communication with Becca isn’t fast, it takes time and great focus for her to compose her thoughts using her AAC device, but Aubrey has learned to be patient.

And Becca doesn’t hold back.  I watched from a distance one afternoon as Becca told Aubrey, “frustrated, you.”  
Aubrey probed deeper and eventually discovered Becca was frustrated with her because Aubrey had been out of town the week before so she hadn’t been able to come to see Becca that Thursday.  Guess I might be frustrated too.

Aubrey watches during the week for stories or songs that Becca might like that she can bring to share with her.  At gatherings, Aubrey makes sure Becca is positioned so that she can see and hear and be part of whatever is going on.  She tucks in close to whisper explanations or funny thoughts in Becca’s ear and she always looks for a way to involve Becca in whatever is going on.

Aubs and Becca dancing at a wedding reception.

But this kindness and caring is not a one-way street.  Becca’s love has changed Aubrey as well.  Becca has taught my daughter that everyone has something to say and that just because someone is different doesn’t mean they are less.  Becca listens intently to my daughter’s concerns.  She shares her feelings and ideas and pushes Aubrey to grow.  She has helped my daughter learn to see the needs of others and to look beyond herself (a difficult task for anyone — but especially for a teenager).

These two are friends — not in some “I feel sorry for you so I’ll give you some extra attention” sort of way.  They actually enjoy being together.

So, maybe Aubrey is really more typical than I’ve made her out to be.  Yes, she spends every Thursday night taking care of her disabled cousin, but really, she’s just hanging out with one of her best friends.

No comments:

Related Posts Plugin for WordPress, Blogger...