June 28, 2007

After the monster, 2003



I unearthed another video, taken during the summer of 2003, maybe a month after Schuyler was diagnosed with polymicrogyria. We drove up to the Magic Wings Butterfly Conservatory and Gardens in Massachusetts and got away from our new monster for an afternoon.

But of course, that's not true, and it was especially untrue at the time, when every little thing in the world seemed to mock us and remind us of how things had chhanged. It was an important event, enough so that I wrote about it in the book.

The thing I remember the most about that trip was that it was the first time I can recall Julie laughing after we received Schuyler's diagnosis.


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(excerpt from Schuyler's Monster: A Father's Journey with his Wordless Daughter)

The three of us walked into the main conservatory room and stopped, holding our breaths. We were standing in a greenhouse, warm and full of plants and paths and a koi-filled pond with a burbling waterfall. Of course, there were butterflies, about four thousand of them. They flitted lazily through the air, landing on feeders or leaves or visitors. The visual effect was stunning. Taken one at a time, the butterflies were tranquil. When seen en masse, they became a frenzy of motion, completely silent but suggesting cacophony. We walked slowly down the paths, Julie and I silent in our thoughts as we had been for weeks, and Schuyler wide-eyed and breathless at the sight of so many butterflies.

I watched Julie carefully. I saw the sadness in her eyes beginning to melt away. She carried Schuyler and held her arm out, pointing at some of the impossibly big specimens and hoping one would take advantage of her offered hand and light there. I saw how in this place, maybe the most ethereal place we’d ever been, she wasn’t the mother of a broken child. Schuyler didn’t speak, but neither did we. Neither did anyone here.

We sat down on a bench and watched the butterflies swirl around us. One landed on Julie’s bare shoulder, and she laughed as its feet tickled her skin. A few minutes later, another landed on her forehead. Schuyler stayed still for as long as she could, but eventually she took to following them around as they flew lazily past, stalking one until another caught her attention.

When did I get so serious? I thought as I watched Schuyler and listened to Julie’s laugh. When did I turn into such a sad person?

I walked over to a little bronze fairy sculpture that held a feeder, consisting of a tiny glass bowl and a sponge soaked in sugar water. There were a few butterflies sitting on her hand, and as I held my camera out to try to get as close of a photo as I could, a giant Blue Morpho landed on the back of my hand. He was huge, and yet barely registered any weight at all. I held my breath as he slowly opened and closed his wings. A few seconds later, he took to the air.

I looked down to see Schuyler watching me, a curious little smile on her lips. Neither of us made a sound.

24 comments:

  1. Anonymous2:25 AM

    Wow...just...wow. That was absolutely ... I'm speechless. Lovely. Beautiful. Touching. Thank you.

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  2. "When did I get so serious? I thought as I watched Schuyler and listened to Julie’s laugh. When did I turn into such a sad person?"

    How many times have I asked that question about myself since Casey, my son, was diagnosed with hydrocephalus before he was born almost 5 years ago?

    I just recently came across your blog. I want to thank you for writing down the thoughts that so many special needs parents, especially dads, have.

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  3. Anonymous7:40 AM

    That was such a lovely video, and very bittersweet- it definitely brought tears to my eyes. Your writing about that time is also beautiful. Thank you.

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  4. I first saw this video probably a year ago, not long after I started reading your blog. Though I knew nothing about the timing, it moved me exactly as if it were the first moments of lives forever changed (in no small part due to your amazing music choices).

    When watching the video, you cannot help to be reminded that, no matter how brutal, life is about joy, and our children reflect that joy.

    My husband and I both had the exact same thought: It is really too bad this video can't be a part of the book; it is the epitomy of life with a broken child.

    As always, thanks, Rob.

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  5. Oh!
    So beautiful.

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  6. The three of you are a beautiful family and I really want to thank you again for letting us in.

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  7. Anonymous11:17 AM

    Oh. Migod.

    Perhaps a marketing campaign pairing the book with a box of extra-absorbent Kleenex?

    No way will I survive that book (or god help me, a reading, should I be so fortunate as to attend one) without one.

    Beautiful, engaging, honest, simply gorgeous prose.

    Thank you.

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  8. I loved that video when you first posted it and it's even better now.

    The best part is toward the end, Schuyler standing there so still as the butterflies swirl around her. I thought as I watched it how many people you will never know whose lives have been touched and perhaps changed because of your willingness to share Schuyler with the world.

    There is a man on flickr whose son just died of cancer and as I checked his photos today, it struck me the power of the internet -- how we touch the lives of others in ways we will never know, how someone like his son (and mine) can continue to move people after their death, and how someone like Schuyler, a mute little cyborg in a small town in Texas, can be the heroine of so many people around the world that she will never know, and never even know about.

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  9. I remember this from when you originally posted it. I can't believe I've "known" your family for so long. Even though I've read along as it happened, I know I'm going to be moved to tears through my reading of Schuyler's Monster. You're an amazing father.

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  10. I admit- both these videos made me tear up. The love you and Julie have for Schuyler, and she for you, is palpable. The stolen kisses, quick hugs and sheer joy is so heartwarming to watch.

    Thanks for sharing!

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  11. Anonymous3:35 PM

    damn you for making me cry... :)

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  12. Anonymous3:35 PM

    and...what song is that?

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  13. Truly beautiful.

    Thank you.

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  14. Again, it strikes me how beautiful Julie is, and what a beautiful family you have. I'm a people-watcher, and I suspect that if I saw the three of you somewhere, I couldn't help but watch. (I really don't mean that in such a creepy, stalkerish kinda way as it sounds!)

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  15. Along the people-watching lines.
    I, too, am a people-watcher.

    Thank you for letting us watch for all of these years. For letting us learn those lessons with you, from you...

    A counselor-supervisor once defined the difference between secrecy and privacy thusly: something that is private doesn't change anything when it is revealed while something that is secret changes everything once it is learned.

    Most of all, thank you for having the courage to alter your privacy enough so that we can try to understand (even marvel at!) how a family survives a secret like Schuyler used to harbor.

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  16. Anonymous9:40 AM

    My favorite video was the one at the pond in your Plano apt. complex where you view duckage, she signs trees, and turtles appear at the end.

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  17. In case anyone is wondering, yes, I did change the music. Hopefully it'll be a temporary change, but if not, I like this piece, too. I can live with this.

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  18. what a beautiful, charming little girl. her giggles in the first video are priceless.

    thank you for sharing your story.

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  19. Anonymous10:21 PM

    I think what I see in these comments and what I feel when I watch this video is that words are inadequate. Thank you.

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  20. This makes me want a Schuyler of my very own. Such beauty in this video and the amazing reality that you have a passion for capturing all things Schuyler. She is very blessed.

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  21. Oh yeah....you really shouldn't stop at the book. Schuyler would make an amazing movie.

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  22. Anonymous8:44 PM

    I remember this video from years ago, back on the old and lovingly hand-coded website.

    I just watched it again with my daughter Annika, my girl so different than Schuyler, my girl with too many words, too many of them about things I'd rather not think about. Still, I think they would understand one another. I think, anyway.

    Annika watched the video, fascinated. At the end she told me,
    "I think that was about happiness, and sadness, and love."

    Thanks for posting it again, Rob. So beautiful.

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  23. On that day maybe schuyler didnt need words, because certainly to us watching you could see the pure delight in her face and the happiness in those huge sparkly eyes. She was in her element and it was so clear to see, U guys are amazing!
    xx

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  24. Rob

    Thanks for this post. I can't wait to get my hands on the book.

    Butterflies are magic, it's wonderful when you can be surrounded by them.

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