Thursday, June 23, 2011

Just when you think you're starting to climb out the other side

Grief comes back in full swing.
I KNOW it takes a while but with this new round of genetic testing the reality of the situation is very scary.
They're testing for a lot of very scary disorders.  By very scary, I mean fatal. 

The worst part?

Results can take up to 4 months.  4 months?! Yes, 4 months.  4 months of not focusing on my little guy who could be very sick, but instead focusing on my little guy who is moving mountains.  He's rolling with enthusiasm and has figured out how to move on his back by shimming and pushing with his feet.  Granted, it's not the RIGHT way, but it's something.

I feel like I have two file cabinets in my brain.  One filled of all the information I learned PRE-Bear.  Calculus, Statistics, Statics, Machine Design, PLC, Thermodynamics (I majored in engineering), how long to cook a chicken, best way to clean a microwave, etc.

Then there is filing cabinet #2.  It's one of those big monstrous ugly gray office ones.  Not the pretty wood, blend into your decor ones.  And it's filled with files of Bear. Microcephaly, Sandifer's Syndrome, hypertonia, hyperreflexia, GERD, Failure to Thrive, Lumbar Puncture, Neurotransmitter Diseases, Lysosomal Enzyme Screens, Metabolic Disorders, Mitochondrial Disorders, X-Linked Genetic Disorder, Prevacid (generic Lansoprazole), Baclofen, Valium (generic Diazepam), Propofol, Versed, MRI's, CT Scans, unknown etiology, NICU, and the list goes on.

These aren't files that I ever thought I would need.

And ya know what that bottom drawer is filled with?
One file folder.  Labeled : Fatal Disorders.  And you know what's in that file folder?  NOTHING.
Because I can't imagine my life without my son.  I can't imagine the moment of receiving that diagnosis.  Heck I can't even type it without tears rolling down my cheeks much less actually think or learn about it.

I have a rare genetic orthopaedic disorder.  I've known about it for 4.5 years now (despite having it my whole life) and I can still barely grasp the concept.  Thinking that my little guy may not be permanently mine is just unbearable.

It makes me want to pack him up and run.  Run somewhere safe, somewhere that I can't be reached.  Because, surely, if you cannot receive test results then they don't exist.
You'd find us here, marveling at the view. 

Life has given me lemons.  I'm not quite sure I'm able to make lemonade just yet.  I might need to find some raspberries.  Mmmm...then I'd be able to make raspberry lemonade.

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