For some reason this word has been bouncing around in my head today like mental “pong.”  I guess that maybe it goes back to that whole conversation about what constitutes “normal.”  Or maybe it’s just that the start of school has triggered teacher flashbacks.

I’ve got this internal struggle with how I see Grace and Hope.  None of us knows what the future holds for our children, but still we dream, we imagine, we speculate.  I’m not a very specific dreamer, I haven’t got an occupation picked out for Grace but I assume she has some future and just want it to be a happy one.  With Hope, on the other hand, I worry first and assume later — or, rather, I assume that her future is something to worry about.  

I have access to reams of research on people “like” Hope, but none on people “like” Grace.  I’ve yet to reach the point where I feel empowered by any of that information.  I very rarely go on to the organized PWS websites because I always end up staying too long, reading one more article than I should have and wishing I could just drag and drop the memory of what I’d just seen into the trash.  Unfortunately I seem to have this compulsion to test myself at least once a week to see if I’ve grown enough to be able to handle the information.

I haven’t grown much.  But when you see “life expectancy” in the heading, how can you not click?  And no matter how much I tell myself not to, I can’t help but read these things as a crystal ball — even though I am educated enough to understand exactly what is being presented and to know that even if it is applicable to Hope it is only just barely so.  

I wonder if Hope will always be judged as a specimen of Prader-Willi Syndrome, as opposed to a person in her own right.  Will every achievement and deficiency be judged according to “the latest research”?  For instance, Grace is in the midst of the terrible twos and when she throws a fit because she wants more fries, or a popsicle and we say “no” we chalk it up to typical two-year old behavior and respond accordingly.  How different will it be for Hope?  Or will she even know what a popsicle is?

It just seems like Grace will be allowed to grow up like a typical kid with pretty wide-open expectations and a lot of potential while Hope is going to be limited.  At one year old we waited with anticipation as to what Grace would do next, her next new word, her next new physical feat.  With Hope, even though she will have new words and feats too I don’t find myself anticipating them.  Instead I feel a sense of expectation and dread, one year old…this is when the food-seeking will kick in…or maybe two.

The thing that is so upsetting to me, and this is the real struggle, is that I am doing this to myself.  There is no one in my family or circle of friends or extended support network that has suggested any of these things to me.  All of this dread and depressing expectations for Hope are totally self-generated and it just kills me that this is how I think of my own child.  The thing is, I have no idea how to change this perspective…is it just a matter of time?  Is this still the initial shock of diagnosis, the coming to terms with the unexpected?  If I just give myself time, will I adjust naturally and look back on this time in two or three years and say “remember when?”  Or if there is something specific that I have to do — will somebody tell me?

And so with all of this baggage I’ve decided to start a Prader-Willi Support Group for the Central Valley.  Yes it is amazing what you can accomplish when you’re trapped by a breastpump but with a laptop and Wi-Fi.  The truth is I am not at all sure that I am prepared to meet other families — and especially kids with PWS, but I feel very strongly that I and other families in the area should at least have that option.  I’ve been in a support group at Exceptional Parents for a month or two now and have found it very, very helpful…it is the highlight of my week these days.  I can’t tell you what a relief it is to just sit in a room with other people who have experienced what you have–even if you don’t talk about, which often enough we don’t.  But it is nice to be able to answer “how’s it going?” with “fine” and not have to explain that “fine” for you may mean something quite different that “fine” for somebody else.

But I’d been thinking about starting up a group for awhile and on a particularly good day, in a particularly positive mood, I decided to just take the plunge and in one pumping session had started a Yahoo! Group and sent a few emails and bing-bang-boom, there you go!  I talked tonight with the head of the PW California Foundation about our first few meetings and I asked about refreshments…what’s the standard protocol?  I assumed that cupcakes, cookies, punch, etc… would be out but I was pretty unprepared for “just water.”  Not even coffee.  Just another reminder of this new terrain we navigate.  It got me thinking of this essay, my prayer for today…


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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