But I don’t want to be a pirate!


Even if you are just a modest fan of Seinfeld, you’ve no doubt seen the famous “Puffy Shirt” episode.  Jerry gets hooked into wearing a ridiculous “puffy shirt” on his Today Show appearance by Kramer’s low-talking girlfriend.  My favorite part of this scene is the whiny way Jerry says, “but I don’t wanna be a pirate!” and that is pretty much where the analogy ends for me.  I’ve been sounding a little like whiny Jerry these days.

To my credit, most of the whining has been in my head but it irritates me just the same.  I’ve written a bit about my reluctance to be a “special needs mom”…but lately I’ve been wondering if that reluctance might be bred of the fear that I may, in fact, be well-suited to this challenge.

The video “Hungry” that I posted a couple of days ago, in the Crystal Balls post, has stuck with me.  I can honestly say that watching that video, and reading that article were the first time in the past six months that I looked at a possible future scenario for myself that seemed…well…good.  And it’s ironic because in all truth, the situation presented in that article and video represent a case of PWS on the more severe end of the spectrum.  And yet as I watched that, and listened to that dad, I thought, “I could do this.  If this is what the future is, I can do that and be good at it.  I can even look forward to that.”

Don’t get me wrong, if I could get rid of Prader-Willi I would in a heartbeat.  My heart aches for Hope and it always will.  I long for her to live an uncomplicated, happy life and I would give anything to provide that for her.

And I guess that’s where the whining comes in.  God must get really tired of us sometimes.  Here I am praying for strength, for hope, for acceptance, for joy and when I begin to sense my prayers are being answered — I balk.  

“But I don’t want to be a special needs mom.”

“But I don’t want to look forward to that future.”

“But I don’t want to be o.k. with the way things are.”

…yada, yada, yada.

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