Tuesday, February 8, 2011

Of lightness and music

Every Wednesday, Phoebe has occupational therapy (also called OT), which means a woman comes to my house and helps teach Phoebe how to jump.  And eat.  And use a pincer grasp.  And flex her wrists.  And chew her food.  And balance on a balance beam.  And go "over" an object in her path.

And every Wednesday, I die a little inside watching my baby try so hard and get so frustrated try to learn how to do things that come naturally for most kids.

I am friends with an amazing woman on Facebook whose son has special needs (God I hate that phrase) and she is someone I hope to meet in real life and you know who you are, Nancy.  She posted something a few weeks ago that was something like, "Today I am not going to think about what I am applauding my child for doing, I'm just going to clap".

And I am mad I didn't write down the precise way it was worded, because it was perfect.  And now I can't find it.

And anyway, I was pretty depressed that week, what with the OT and all ... at least it happens on Wednesdays so that by the time Friday (and more therapy) comes around, I am emotionally stable enough to have a nice weekend.

A few Saturdays ago, I took Phoebe and Jack to the Templeton farmer's market and  -- as there usually is -- there was a band playing.  This band was 3 musicians -- all around 17 or so -- playing folk.

Phoebe was in love.  She sat herself down on the grass and moved her arms and absolutely BEAMED at the musicians.

Then she stood up and danced and pointed and twirled.  It was -- I swear to you -- the most beautiful thing I have ever seen.

The sun was shining.  It was January.  They were playing "Wagon Wheel".  And my little sweetie didn't need anyone to teach her how to dance.

A woman came up to me and said "She really loves it!" And I said "Yes, she loves music of all kinds".

I looked around the crowd gathering (and then they were playing "I'll Fly Away", and I promise you've never heard a better version in your life) how many people were watching her and smiling.

I noticed a woman taking pictures of her and figured it was harmless. 

She walked up to me and told me how incredibly happy it made her to watch my daughter enjoy the music.  She told me that her daughter was the one playing the banjo.

The conversation wasn't quite finished (and neither was the song) when Phoebe saw some strawberries on a vendor's table and decided to grab one and eat it.  I walked over and paid for the basket and Phoebe promptly devoured several of them, stems and all.

And they weren't totally ripe.  The sun may have been shining, but even in California the strawberries could use a little extra before picking probably.  And she didn't mind at all, she just kept hopping away through the park.

I think I was able to keep it together until I got to the car, but when I did, the joy in my heart was just too much and I had to cry.  And text Nancy.

There's a certain bittersweet magic in watching your child learn things that are an enormous struggle for them.  A huge sense of victory for the battles you've faced.  And there's days of deep sadness that -- I believe -- only parents with special needs kids can understand.  It goes to your core.

And the moments like that, the smile on her face and the pure joy emanating from her -- it was palpable.  The crowd felt it and smiled.

And I have never felt so incredibly proud of who she is and the things that bring her joy.

And I didn't have the heart to tell her the strawberries weren't ripe.

And I don't have the heart to tell her she's got a long road ahead.

But we're walking it, and dancing it, to the tinny twang of a banjo.

And I am just going to continue to clap.


Annie said...

Beautiful post. I can just picture her doing this, and it brings a huge smile to my face. <3

mum22babes said...

This simply made me cry. We're walking the same road with our little guy. I so know your heartache. And I know how depressing each session can be. And then they meet goals and it's a victory that you can't explain to people that don't understand. "Special needs" is such a hard phrase...I just try and focus on the special part. You're a special mum to be able to walk the road so gracefully.

Nancy said...

♥ We know a more profound joy than those who don't cheer as loudly or clap as often as we do because the little things come easily to their children. For that, we are blessed. These therapy sessions will be only memories someday, and you will be able to see them only when you turn around. Love you.