Traveling Companion
I don’t mind traveling. I rather enjoy it, actually. But most of the joy I get from leaving home and venturing out comes when Schuyler is my traveling companion.
Last week, we had another chance to hit the road together. The occasion was the 43rd Annual Mid-South Conference on Communicative Disorders in Memphis, Tennessee. I was delivering the keynote address at the closing luncheon, and Schuyler was there because none of what I say means much of importance without her, and every bit of it makes sense when she’s there.
Schuyler excels at these conferences. She is rarely shy, always curious, and no matter how many planes we transfer to or how many hours we spend in sweating transit, she is always fresh as a daisy and ready for the next thing. We’re taking another trip next week, this one personal, and she’s already pumped and ready to go. Schuyler is an adventurer, in the truest, most Shackletonesque way. Her taste for the new is never satisfied. Routine is perhaps her most frustrating foe. Where most kids, particularly those with disabilities, may find a comfortable groove, Schuyler finds only ruts.
She makes friends, usually young student attendees or volunteers. This conference was student-run, so her options were almost endless. She gravitated to a handful, however, including one volunteer who revealed that she, too, has a chinchilla as we rode to the hotel from the airport. That was it. Cue the many, many photos of Schuyler’s chinchillas. (And maybe a restraining order by the end of the conference.) Schuyler makes friends effortlessly and holds them close, and she wins them over. I can watch her do it a hundred times at a hundred conferences, and to me, someone who can be painfully shy at the most inopportune times, it looks very much like a miracle.
I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.
I see Schuyler at work, and my own fears are eased, if only for a short time.
As I was delivering my speech, I could see, out of the corner of my eye, that Schuyler was working on something on her iPad. I didn’t think much of it; I won’t pretend that she pays attention to the entirety of a forty-five minute speech, even if it’s mostly about her. But when I was done and was leaving the stage, Schuyler handed her iPad to me. She’d written a message for the audience. She was thinking of giving it herself, but chickened out at the last minute. Schuyler wanted me to read it to them instead.
“Hello everyone. My name is Schuyler and I am here for my dad’s speech today and I can’t let my dad down. Thank you.”
As if she ever could.
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So much to love about this! I’m not disabled so I won’t deign to speak for anyone but my own child, but I think it IS inspiring for me to see Schuyler and to know how far she’s come and to watch her blossom. Not in that icky “See how hard she has it? You can persevere!” kind of way, but in the “Wow, this gives me hope that my son can thrive and blossom, too” kind of way which makes me keep pushing ahead on those days when what I really want to do is beat my head against the table in frustration. If that kind of inspiration is wrong, I don’t want to be right.
Shackletonesque is my new favorite word – and so many metaphoric possibilities! I particularly like Antarctica as a substitute for Holland: Holland has pretty flowers ‘n stuff, but it can be a little.. staid? (apologies to all the Dutch). Antarctica is cold as hell and dangerous, many will die, but you’ll be privilege to such fierce beauty if you land there. There are the missed goals (2nd to the pole), debt at home, and the boat names: Nimrod (obvs), Endurance, Quest… and survival against all odds. Love it.
Youve worked so hard to be Schuler’s voice and now that she is a young woman she has all the experience of all the speaking engagements she has attended with you to help her become the ‘speaker’ one day soon! I am happy to predict that within one minute of begining her speech her audience will have forgotten the electronic wizardry behind it and will be hooked on her authentic voice. She has such joy meeting the world, as you said. I think regardless of her topic- heck, it could be lipstick shades!- you would be the proudest member of that audience, Robb. You and Julie have put such loving effort into helping her hear her *inner voice* and now so many people want to hear it.
Very Well Done,
I love you and the people who comment here who so obviously also love you. Sometimes it’s just as simple as that.
In response to Jan’s comment, I’d like to point out I don’t ‘love’ Robb- I barely know him.
He himself admits that he is as baffled by the quest to make the right decisions for his child 100% of the time- as we all are, if we are being truthful.
What I believe is true is that he loves his daughter. And he is coming to an excruciating time for any parent of a child with a disability; moving out of the role of Parent of a Special Needs Child and accepting a new role as Parent of an Adult With Special Needs.
A child’s transition to well supported independence can be difficult for many parents but particularly so when he has been seen, in large part, as his daughters voice or the competent, responsible adult who is seen very much by some as the person who conveys his child’s needs.
I truly hope that he manages this transition with grace- his love for Schuyler goes without saying!