Monday, October 25, 2010

A major case of the whine...

Today my Facebook status just needs to say: "Stephanie Richardson cannot stop whining, so stay FAR FAR away!"  I'm feeling FAR from grateful, and just having a really bad "why me??" day.

Why?  Oh how nice of you to ask!! And since you did, I'll share. (There is an X in the upper right hand corner to RESCUE yourself now if you like ;-) ).

Jeffrey woke this morning, as he has off and on for the past 2 weeks or so - SCREAMING! I cannot turn on his bedroom light, or the screaming escalates. I have to turn on the hallway light and prop his door open so I have enough light to change his diaper. OH great... he soaked through everything again. And I don't mean what David did and other boys do... we're talking head to toe front of him is soaked, his pillow, bedding, blankets - where does all this fluid come from? He's been off diamox for weeks now!! I get him cleaned up, but I can't clean his bed right now because he won't let me put him down.

We go to the living room and turn on dim lights.  Aly says she's shaking. I grab the blood sugar monitor to test her, but have to put Jeffrey down to do it.  Jeffrey is screaming while I test Aly - BS 70, which is okay, but is it a rebound? She's shaking pretty bad. I grab her a glass of apple juice, then pick Jeffrey back up - all 36 pounds of him. Are we out of Danonino's? Crud. (Why are there no more Danonino coupons? I refuse to pay full price!!)

Kids are throwing fits about lack of their favorite yogurt while I get a special new cereal - sprinkle Cookies Crunch. *AAACHOO*  Kay Lee walks in the kitchen and can't breathe worth a darn. Great. That whole runny/stuffy nose thing going on.  No fever, and she is all dressed and ready to go to marathon club, so I guess she has no plans on staying home.

Why oh why does this happen on the days that a front is coming through? The back of my head and my neck feel like they are going to explode at any moment! I would LOVE to do my own decompression some days it hurts so bad - I mean really, could the incision be that much worse just to relieve some of that pressure??   Yes, all 3 kids needing me to play nurse/mom/caregiver all at once when my own body is screaming to be put out of its misery.

And did I mention that Kay Lee's hair is falling out in dime size patches? It only itches on occasion, she says. The skin looks perfectly healthy. WTH does this mean?  11:45 appointment with the pediatrician tomorrow.

But you/your children don't look sick? You/he/she looks great/fine/completely healthy!

Yes, be forewarned. The next person, and especially doctor that says this???
I hope someone would be willing to bail me out of jail.

You were not there when Dr. R sat us down to tell us our 4 week old baby girl's stomach was twisted in half and required immediately emergency surgery - get her to Children's Mercy NOW - the surgeons are waiting! Rare condition they'd never seen.

You were not there when our 18 mos. old passed out cold one morning and didn't wake up for 10 minutes. Next episode was 62 minutes. NO ONE could tell us what was wrong either time.
Only 5 months later and TONS of tests and exploration, agony and worry did we figure out it was a blood sugar issue of unknown cause.

You were not there when after 2 years of walking, rocking, holding, sleepless nights, and begging of doctors, we are told our 2 year old boy has almost 2 cm of his brain falling down into his spinal canal and crushing his brain stem (never mind the life threatening complications that could cause).

You are not here now as we deal with the day to day complications of these 3 children's severe medical issues.  The surgery on the tummy that was supposed to be a one time fix, that turns out to be a connective tissue disorder that appears to be affecting many different systems of her body, including possible Intracranial Hypertension and Arnold-Chiari Type 0 - partial mystery as of yet.  You don't hear her complaints of nausea, catch her vomit and clean her up, hold her during the excruciating headaches and wish I could help when she says her vision in blurry, but doctors say nothing is wrong.

You don't have the constant worry if Aly will wake up in the morning, if she had enough to eat the night before, was she over active or stressed, or is she getting sick, which completely depletes her body - complete mystery #2 as of yet. You aren't here to carry her when she can't walk anymore because her legs and knees hurt, her stomach hurts, or she is shaking and can't walk straight from a blood sugar low.

And what the heck is going on with Jeffrey? Which came first - the chicken or the egg? Intracranial Hypertension or Arnold-Chiari Type I? Which caused the brain damage which resulted in the severe IGF-1 deficiency and severe Childhood Apraxia of Speech? Anyone want to help us hog tie him every night to make him get his growth hormone shot? What else is ahead?

With all this, I'm just going to say it: It is enough to have 1 child with special needs, but 3?...4?? I didn't even mention my awesome David that still needs me too! He's ADHD and needs help coping, scheduling and organizing.

So if we all look so frickin' normal and great, why is this mom so beyond exhausted? Go ahead and say it: "You ungrateful BITCH!" Well, so be it. I'm allowed a 15 minute pity party periodically.

I cannot be everywhere and do everything. The money tree is no where to be found and every inch of the bottom of the barrel is visible.

As I do every single day... I just keep praying and holding these precious babies (yes, David - my baby) in my arms as long as I possibly can.
Tomorrow... back at it.