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The Long-Abandoned Path

imageI’m in Vermont this week, speaking at the Vermont Family Network conference in Burlington. I’m thrilled to be here, and I’ve been looking forward to this for a while now. 

Today I watched orioles outside the window, even as the remaining snow slowly melts. Springtime in New England is not the most scenic of seasons; the ground is still covered with snow, but it feels less “winter wonderland” and more “Oh God, when is it going to end?” Honestly, though, I miss that feeling, too. Springtime in the north isn’t just warm and pretty. Here, it feels like you survived something epic. A sense of renewal here is very real in a way that just doesn’t register in a place like Texas. Back in Dallas, spring lasts about 45 minutes, long enough to take cover before Mister Golden Sun arrives to murder everybody.

It’s a little bittersweet, being back in New England. We moved to Connecticut back in 2000, when Schuyler was only a couple of months old. We wanted Connecticut to be our home, different from Michigan or Texas. It was going to be our little Rummel-Hudson family adventure, a niche that we would carve out for ourselves. As it turned out, our final destination turned out to be someplace very, very different. Not exactly Holland, perhaps, but not New Haven, either.

So we moved back to Texas to be near my family and that whole support network. And now, my beloved cousin lives here in Vermont, 1,700 miles away, with her awesome husband and her equally fantastic special needs kid. Life can be funny sometimes. Not necessarily ha-ha funny, but still.

Julie and I were nomad parents, following a dream of better supports and better schools and communities for Schuyler. I don’t know what I would say if I could go back in time and tell those parents in 2003 what the future was going to look like. I might have told him to sit tight, that they might have been chasing an elusive dream. I don’t know, to be honest. I might’ve just told them to follow their hearts, which is doubtless what they would have done anyway.

My only regret about this trip is that Schuyler was not able to come with me. As I wrote a couple of weeks ago, now that Schuyler is fourteen, it feels much more appropriate for her to attend engagements like this with me. She’s old enough to understand what I’m talking about when I discuss the things that our family has gone through, and she’s mature enough to contribute to the conversation. Unfortunately, this conference coincided with the beginning of STAAR testing, the Texas flavor of No Child Left Behind. As meaningless and soul-sucking as those standardized tests can be, in my opinion, there was still no way that Schuyler’s school would have acquiesced to an excused absence without a fight. And to be honest, that’s just not a hill I was looking forward to dying on, just this once.

In my keynote address tomorrow, and also in the breakout session that will follow, I will be discussing disability rights in the context of a human rights movement. It’s the same topic I’ve been speaking on for at least the past year, and one about which I feel very strongly. It really is something of a call to arms, but as my cousin read through my speech last night, she pointed out something that I didn’t mention, and probably won’t. She said the important missing piece is that this fight, the one to which we are all so adamantly and unwaveringly committed, is just exhausting. The amount of fight and positivity and hope that special needs parents bring to the table is not an inexhaustible resource.

Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is.

We are where we life and perhaps fate have brought us, and it’s pointless to think about what might have been. Schuyler’s life has been one long series of “what might’ve been” conversations. Of all the things that we have grown tired of, nomad parenting is perhaps the most exhausting.

But like all the other decisions that special needs parents make, you cross your fingers and you leap into the unknown. Yoda was wrong; there is very much a try.

So tomorrow, I will bring Schuyler’s message of hope and my message of advocacy to a new audience, one that I am very privileged to address. But for today, my mission is simply to find a very special souvenir for Schuyler. I’m looking for gear from the local minor league baseball team. It would be inconceivable not to, given Schuyler’s own particular interest, one that borders on obsession.

They are the Vermont Lake Monsters.

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