Do you really want to know what you really want to know? Or no?

So, I had kind of a weird experience today, which has now been yesterday for a couple hours.  I was going to wait to write about it tomorrow, but I can’t sleep and tomorrow has become today.  I’ll sleep later.

I went to the grocery store to stock up on the basics.  I entered and went to the right, like 90% of shoppers do.  I stocked up on bananas, nuts, hot dog buns, broccoli….I headed toward the little cheese section (which is stocked with tiny, tiny, cheeses, lol).  As I approached I recognized a person that I have met recently, an adult, with Prader Willi Syndrome.  I didn’t make contact, I feel a little bad about that…it’s not polite.  I didn’t think that they’d remember me and besides, they were deep in concentration over their list.  

Of course, my motives in not saying hello were not entirely noble.  The truth is, I didn’t want to blow my cover.  As I stood and debated over whether to say ‘hi’ and what kind of ricotta cheese to buy, I noticed that the person moved toward the little counter where the food and beverage samples are offered.  I wanted to watch.  And I didn’t.  I really, really didn’t.  But I had to.  Even still, I actually made a figure eight circling in front of the cereal wall trying to make up my mind what to do. Finally I ducked into the soup aisle and peeked over to the samples bar, acutely aware of how creepy I was.

There was nothing peculiar really about the trip to the samples table.  In fact, the person slowly and methodically ate just one serving of the pasta salad being featured–which was really no more than a moderate-sized bite.  There was a small cup of coffee served, then another, then the coffee ran out…the little girl working the counter was notified and promptly set about restocking the supply.  There was conversation, then another cup of coffee…all with sweetener, but I can’t stand coffee without a ton of sugar and cream, so how could you blame them?  I resumed my shopping between the first and second cups, but it’s a small store and I could still watch out of the corner of my eye.  As I prepared to leave the store I made one final pass and found that the person was back almost exactly where I’d first spotted them, again engrossed in their list, studiously working a calculator to keep within their budget.  I should have said hello at least, I was leaving anyway.

So I’ve been trying to figure out ever since how I felt about the whole thing.  It’s one thing to meet somebody in a clinical situation, it’s different to see them out and about.  Of course, if I didn’t know from another context that this person had PWS, this encounter would have never happened.  But I did know.  I cross-posted this week something a fellow blogger, also the mother of a child with special needs (Down syndrome), wrote about watching a news story about a boy with Down syndrome, :

I didn’t say much about the video, mostly because when I see things like that, I’m not sure what to think. I think I’m just always a little hungry for glimpses into the future, of what L will look like, be like, act like (which I know is absurd, as if just because someone else has Down syndrome L will be like that person).

And yet some of us do have a sort of “crystal ball” that we can glimpse the future with — and it’s not a clear blessing or curse.  It struck me as I watched from the soup aisle that I would never ogle a 20-something woman to catch a glimpse of Grace’s future, but watching this person to catch a glimpse of Hope’s future was not so absurd.  The simple fact of the matter is that these two individuals, as individual and unique as they might be, also share a very, very, unique and specific trait that sets them apart from other people.  There are certain physical characteristics that they will share–small feet, small hands, and perhaps common facial characteristics too.  And although we are always reminded that there is a range of mental abilities and challenges, it is hardly unreasonable to presume that there will be similarities there as well.

Having the ability to glimpse the future is a peculiar and daunting experience and one I am not really sure how to take.  On the one hand, I should be glad I suppose…today I watched an adult with Prader Willi syndrome function quite competently in a grocery store.  They behaved a little differently, but if I hadn’t known to watch I probably would have brushed by without a second thought.

But I did know, and I did watch.  And so the flip side is that your expectations are challenged–what can I bear to expect and hope for?  Do I set the bar higher than this?  If I do, does that mean there is something wrong with this?  What if this is the best there is?  Will I hate myself later for looking down now?  Will I be disappointed in my daughter?  I emphasize the “I” in all of this because it’s true, not because I’m proud of it, but because I still haven’t figured out how to not have a selfish, self-centered response to this stuff.

If I take a purely philosophical approach the whole deal, I’m inclined to wonder if there isn’t a reason that God gives some of us with special kids that crystal ball?  Why do we get these glimpses into the future that most people don’t get for their kids?  Is it mercy?  There is a phrase that has been stuck in my head for a couple of weeks, since I read it in an article I wrote about here.  Describing life with a child with special needs, the author wrote of “the lack of a recognizably promising future.”  As I’ve dwelled on that statement, and how fitting it feels, I’ve focused exclusively on the “lack” of a “promising future.”

I hadn’t really given much thought to the “recognizably”-part.  

Maybe these glimpses are a way of making the future recognizable.  

Maybe these glimpses are chances for us to learn to recognize a different kind of promise.

Maybe it’s time for bed.

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This entry was posted in Postcards from Holland, Random Stuff and tagged . Bookmark the permalink.

2 Responses to Do you really want to know what you really want to know? Or no?

  1. Bet Hannon says:

    You are articulating a lot of what I’m feeling (when I let myself)…. Thanks.

  2. Jen says:

    Thank you, it’s nice to know that I am making sense…sometimes I wonder.

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