A little honesty

Since I praised the last cross-post for its honesty, I figured I might as well try some of my own…

I am not o.k. with this.  And by “this” I mean the Prader-Willi.

It is not o.k.

I am not o.k.

O.k.?

This is a seriously screwed-up syndrome, and every time I explain it to somebody it takes every ounce of restraint I have not to end my summation with a string of f-bombs.  It’s not bad enough that there is the insatiable hunger, there’s the out-of-whack muscle-to-fat ratio on top of it.  And if that’s not bad enough, there’s the high pain threshold, so even common-sense self-protection is out …oh and the never vomiting, that’s the cherry on top. But that’s not the half of it, there’s the OCD, the skin-picking, the high possibilities of scoliosis and autism….and, oh yeah don’t forget the cognitive delays.  I didn’t even finish the list either.  Oh, and spare me “the range” — yeah, yeah, I know all about “the range” — what range of that list would be o.k. with you?

My faith is coming up short on this one.  I know that there are worse things in life than Prader-Willi Sydrome, but those things aren’t happening to my kid.  I believe in science, I believe in evolution, I believe in genetics — but I also believe in God and that this did not have to happen to my child, or anyone’s child, and I can’t wrap my mind around what a screwed-up planet I live on that even a third of the aforementioned symptoms should be experienced by the same person, let alone my kid.  All the OT, PT, early intervention, support groups, HGH, happy thoughts, and speeches about “what a unique opportunity/blessing/blah-blah-blah this is” in the world aren’t going to ever make it o.k.

So I’m pissed.  And since I have decided to give up my brave face for Lent (along with a few other things), well…there you go.  I haven’t accepted this, I remain as devastated as I was eleven months ago when we got the diagnosis, only now I am royally pissed off and bitter on top of it.  

Honestly.

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This entry was posted in Postcards from Holland, PWS, Religion and tagged , . Bookmark the permalink.

3 Responses to A little honesty

  1. Kari says:

    😦

    Honestly, I think I would be too.

  2. Foster Mama says:

    Amen girl. I still feel this way and I wasn’t even broadsided with the diagnosis. I knew it going in to the situation. Doesn’t make it easier. I have told Big Daddy on many occasions- the next person that talks to me about the “range” is going to get smacked. I hope it’s my mother in law.

  3. Jeannette says:

    Hi Jen – I’ve tried posting comments to you in the past but I was having some difficulties so not sure they made it through.

    I’m with you – it’s not OK at all on any of the fronts. I hate it when I get the “what a unique opportunity/blessing/blah-blah-blah this is”. I laughed when I read that line. Early on in our diagnosis when there was so much unknown, so much to read, so much to learn, I told my husband that if one more person said “you have to take it one day at a time” I was literally going to throw a punch! It could still happen!!!!

    My other “favorite” is “God only gives special needs children to special people.” Really? Seriously. SHUT UP!!!!!!

    Sorry, rant over for the day – you’re not alone. Maybe we’ll even get to meet if we can afford to get down to FL next summer for conference.

    xo
    jy

    ps – love the new look of the site and much easier to load, etc.

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