Sunday, June 27, 2010

Game Changer?

Okay, so I may have the camera equipment, but I don't have the skill that my sister has.  This is my sister's work.  And there are many more that have captured by daughter just as beautifully.  This is Finleigh being mischievous.  Look at her hand about to turn off the light.

I've been going back and forth about whether to write this post or not.  Even now, I'm not sure that this will be posted.  But my pediatrician suggested that Finleigh may have something that quite frankly feels like it would be a game changer.

We know that Finleigh's delayed and there's probably something else going on there.  But I've been quite content to go around in my little mommy fog and believe that she'll one day, hopefully grow out of it.  She's bright, everyone says.  Look at her eyes, there's a light there.  A sparkle.  She's so curious and determined, she's bound to catch up.  I don't care if it takes longer than the average kid, as a parent I still have a picture in my head of a happy, healthy, well adjusted, contributing member of society person when she grows up.  Emphasis on the happy and healthy part.  Even bigger emphasis on the growing up part.

So, when her doctor pulled out a pamphlet on a degenerative genetic disorder that's incurable (though partially treatable) and rare (1 in 100,000), I wasn't real... uhh... happy?  Please, may I just live in my mommy fog?  False hope or not.

Long story short.  Finleigh is going to have her blood tested for MPS 1.  She may or may not have it, though she ticks a lot of the boxes.  If you'd like to read about it, check out this or this link.

We've been through this before.  Genetic testing.  Waiting to find out if she has this or that problem or syndrome or disease.  But this time feels different.  I have a knot in the pit of my stomach.  What if this is the one?  It explains almost everything.

Almost, though not quite.

It freaks me out.  I go between utter terror to complete denial.  From thinking that this is it for sure to knowing for sure it's not.

I don't know when we'll know.  It could be months.  But when I find out, I'll be sure to let you know.  Until then, I suppose we're back to regularly scheduled programing.


  1. I can help you take better pictures this summer. As for the rest... I can pray.

  2. Man, that is heavy stuff... and the waiting to find out must just kill a person. I, too, will pray for you (and you know that's saying something coming from me). And also, here is a BIG HUG! Keep us posted.

  3. That's rough that you need to do the genetic stuff again... sending a hug your way and praying too.

    love you Mander

  4. You are (and will continue to be) in my prayers.