Wednesday, December 21, 2016

Back To the Future

As I sat watching Lamp and her new piano teacher sitting together at the piano during her first lesson, pecking out a simple mary-had-a-little-lamb melody, my head returned to an old, familiar thought pattern, "What are we doing? Are we crazy for starting Lamp on the piano? Is this really going to work?" That kind of doubt is a familiar place to be when you've lived your life as an able-bodied person who has always believed that you need certain things to accomplish certain tasks. You know like, hands to play the piano.

But this is not just about seeing my daughter's potential, it's a paradigm shift of larger proportions. It's Marty McFly and Doc Brown in Back to the Future. In the final scene of Back to the Future (the first one obvs) Marty says, "Hey doc, we better back up, we don't have enough road to get up to 88." It's not that Marty doesn't have faith in his good friend Doc Brown, it's just that in his experience this isn't going to work. He doesn't know what Doc knows yet. Marty has only been in the present and in the past. But Doc... Doc has been to the future. And the future that Doc knows is quite a bit different than the past Marty is familiar with. With the confidence of someone who knows what he's talking about Doc delivers his famous line,

"Roads? Where we're going we don't need roads."

*****
I look around the piano teacher's home... two of her daughters had come out to watch Lamp's first lesson. In most situations this would have felt voyeuristic and I would have been annoyed at kids starting at "the kid with limb differences playing the piano." But not in this home. One daughter came out in her wheelchair (who also happens to have a very sassy, Lamp-like demeanor--I freaking love it) and the other daughter has significant limb differences as well. Both of these girls play instruments, just like their other sister with limb differences and just like both of their able-bodied brothers. If Lamp was going to learn to play the piano we were certainly in the right house, with the right piano teacher and I'll be damned if the Universe itself didn't arrange this little rendezvous.

Which begs the question... how did the Universe arrange this little rendezvous?


Over a year and a half ago we attended a fundraiser for the local non-proft May We Help. They are the blessed angles who built Lamp's smaller powerchair that she uses around our house all day, errry day. (The life-changer as we call it.) At the fundraiser a mother, we'll call her Mom A, spoke about her children with  disabilities, including limb differences, and how as a music major she wanted to help her children play instruments and with the assistance of May We Help, she has figured out a way to help her children problem solve their way to not just being proficient musicians, but good musicians.

See, ability and talent are often at the mercy of opportunity and tools. Years ago I used to spoon feed Lamp her cereal every morning. It wasn't a big deal, just something we did. One day her dad surprised us with a special spoon he had designed and made for Lamp. Within minutes she had figured out how to use the spoon and within one day she was eating on her own and never needed to be spoon fed again. It was an amazing and life-changing invention. I clearly remember being struck with the thought, "She had the ability all along... she just needed the right tool." Huh.

And so it was with Mom A and her disabled children... they just needed the right tools. With May We Help she was able to get them the right tools to be successful musicians. She partnered with another mother, who we'll call Mom B, who was also a musician and who also has disabled children to create a music camp for kids with disabilities to help them problem solve their way to musical success as well.

So I'm at this fundraiser listening to these moms and seeing their children talk about their instruments and of course I have to go meet them. As I wait in line to introduce myself to Mom B I start chatting with a couple of her daughters, just chatting and asking random questions. We eventually ask them where they live. We assume they live in a different city but then she says the name of our neighborhood.

Wait, what? Where do you live? You live in (insert name of our town and neighborhood)? Yep.

Of all the gin joints...
As it turns out, this family lives less than 5 minutes from our house. They are in our same school district. Apparently we have them to thank for the ramp in Lamp's elementary school as it was built just a few years prior for their daughter. Oh and Mom B? She teaches piano lessons. Yes the mom who helps run a music camp for disabled kids, who has a 3 disabled children herself who all play an instruments and yes the very same mom who lives not more than 5 minutes from us.

Lamp had already expressed interest in taking piano lessons. Her grandma had taught her some easy melodies that she could successfully play. But I was reluctant. Of course people with disabilities play instruments, I knew this. But how would I find a teacher who would be willing to work with her? And what if she couldn't do it very well and it was more defeating than empowering? And what if, what if, what if? 
Naturally the Universe heard all this "what if" nonsense and was like, Heavens to Betsy do I have to do EVERYTHING? And promptly placed us at this event together. There we had it, the right piano teacher for the right kid. We waited a year or so to actually jump into the lessons for logistical reasons, but had gone over to their house to hang out and meet everyone sometime last year. As we left their house on the first meeting PSP said to me, "Hey mom I saw a book at their house that we used to have."

Oh yeah? What book?

"It was a book about a little girl with one arm..."

This was a book I was given when Lamp was about 8 months old and we were making her first prosthetic. Our prosthetist at the time said, "Lamp reminds me of another little girl I see here in town. Her lower limbs are almost identical. She's adopted and her mom wrote a book about her... I thought you might enjoy reading it." And she handed me the book.

I quickly texted Mom B and said, "Did you write a book a while ago?"

"Yes."

"This is so crazy, but when Lamp was just 8 months old the prosthetist gave me a copy of your book! I can't believe this! What a crazy coincidence!"

And then the Universe did a palm-to-the-forehead slap and was like Coincidence? You think this was all coincidence? Amateurs!

Is Lamp going to be a concert pianist? Probably not. (Is your kid?) But I think she'll do well. She loves practicing everyday (so far) and has even made a 100 day practice chart like her big sister. Already her toe control is getting better.

Of course this goes beyond piano. Shortly before Thanksgiving Lamp entered a piece of writing to the PTA Reflections contest. A piece she wrote all by herself. She wrote it with her own feet and with her own words. When she finished she said, "Mom I could really win this!" Well she did. First place in writing. For her entire school. Her dad and I cried.

Historically the disabled have been seen mainly for their limitations, the things they can't do. Most of these limitations have not been self imposed, unfortunately they've been placed on them by society. We've institutionalized them, we've shunned them, we've exploited them, we've even killed them. Time and time and time again we underestimate them.

The tide is changing. Slowly. Ever so slowly. We can look back at the people who have helped shape our ideas of what disability means; Hellen Keller, Eunice Kennedy ShriverNick VujicicJessica Cox, and on and on. Where once we used to put people away in institutions, we are now sending them to institutions of higher learning. And where we once thought a physical disability meant a person couldn't achieve as much as an able-bodied person, we now see Paralympic athletes break regular Olympic records.

As an able-bodied person I still have my prejudices. I have to push through my hesitations that are so firmly rooted in our collective able-bodied thinking. But push-through I must because we can't live in the past. We've got to head straight for the future baby! We've also got to create and shape that future. A future that welcomes, invites, and listens. A future that says yes to opportunity, yes to problem solving and yes to expanding our idea of what it means to be a human in this world.

So as I stood there watching my daughter who was born without hands and her new piano teacher discussing different strategies, I pushed through that hesitation and those feelings of fear. I pushed through the past and what I used to think my daughter's life would look like to the present and the future and the opportunities that await.

And I thought to myself, "Hands? Where we're going we don't need hands."

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20 comments:

  1. Wow. Serious standing ovation to the universe on this one. Incredible. I loved this post so much. And ongrats on winning the writing contest, Lamp! That's so great! Also, could she make a practice chart for my boys and encourage them to practice every day?!��

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    1. If I asked, she woud probably love to make them a chart. :)

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  2. Another really cool musician I immediately thought of is Gaelynn Lea, who won NPR's Tiny Desk Concert talent search in 2016. Check her out! https://www.youtube.com/watch?v=jb1oCjiIu9M

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  3. Love this post ! What a great mom you are. Love your kids.

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    1. Thanks Gwen. Although I will cop to feeling completely inadequate most of the time.

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  4. She looks so grown up!!! Miggy, your blog is a bright spot in this darkest day of the year.

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    1. Right?? She does look so grown-up. And thanks for the great compliment!

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  5. LOOOOVE this post!

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  6. Beautifully written. Maybe Lamp gets her writing talent from her mama?

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  7. Anonymous5:40 PM

    Well played Universe, well written Miggy, but above all congratulations to Lamp for winning the writing contest and good luck with her new exciting adventure in piano learning.
    Miggy, I don't remember how I found your blog years ago, but once again I'm so glad I did.

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  8. Amalia10:31 PM

    This is an absolutely lovely piece of writing. Congratulations to Lamp for her writing win, and I hope she has a wonderful time with her piano lessons!

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    1. Oh thank you. I hope they continue to go well for her too.

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  9. Love this post so much. Especially the last line.

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  10. I've never commented on your blog, but I've read it often. I listened to a podcast recently that really opened my eyes. It was from "Stuff You Missed in History Class" about Martha's Vineyard. You would love it. Anyway, one of the hosts of the show, Tracey B Wilson, said that her mom has some disabilities. But she made the point that disabilities are taken away with the right tools. I couldn't quite come to her way of thinking until she mentioned that she has glasses and would be "disabled" with out them, but because we have glasses and contacts, impaired vision isn't viewed as a disability. It blew me away to think about it....because I have glasses....it humbled me to think of what my life might be like with out them. And it gave me a new perspective for others who have physical disabilities. I realized how much I'm like them and how truly important it is to find tools for them to live their lives to the fullest, just like I've been able to.

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  11. This is an incredibly moving and inspirational story. Thank you for it. Your daughter is a bad ass!

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  12. How amazing! Cheers to that little light in us that keeps flickering! Happy piano playing.

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  13. Very inspiring story indeed. Your girls are just lovely and fantastic just like any ordinary girl who loves music. You are blessed to have them as your children, a story worth sharing via my Grabmyessay.com prices mother's love section.

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