Friday, May 16, 2014

It always ends up good

I had to get Abby to the bus... tears or no tears...
I don't normally "fix-up" to meet the bus, but my obvious pajamas usually are replaced with the more acceptable "lounge wear".  You gals know what I mean... yoga pants, right?  They could be pj's... but not necessarily :)  
I couldn't stop crying... it was sort of ridiculous.  I was ugly crying!  I knew it was a bit of a build up kind of morning, but usually I can sleep on stuff and have a fresh perspective after a good night's rest-
Not this day.  A week (or two... maybe three... but who's counting?) was catching up on me.  I guess there were a few things maybe I hadn't processed emotionally or I had too much riding in one basket, but waking up to tears on this day wasn't very good timing because I had Abby's IEP meeting right after I dropper her off on the bus.  I couldn't go in there with red eyes and all teary or they would see me as emotional rather than having real issues to address... and there were issues to address, unfortunately :(
It all started on Tuesday this week when Abby came home early because she had to have an IQ test ordered by the state disability board...
you can stop laughing now :)
I do get it.  I logically understand that a new state needs some documentation of Abby's mental faculties, but let me just say...
They Suck!
(Don't sent me a message about there being better words to use because this is my world and it's the closest I can come to saying what I really feel and still be somewhat appropriate :/ )
I know Abby is slow... Mentally affected... intellectually deficient... whatever the politically correct term is this week... I can't keep up and she's mine!
I'm not in denial... ask my friends
but if you ask me if I enjoy sitting for hours and discussing what she isn't doing...
NO! NO! and... NO again!
I try to be pleasant and honest (we want this to be as accurate as possible... ha!)
I just want to teleport to the beach for a few days afterward...
YES!!!  days... it takes me days to recover... I'm semi-ashamed to admit it, but it's the truth!  
I HATE TESTING!  I've endured watching them put blocks in front of her for years... she still doesn't look.  If she won't look at them, she probably won't pile them up either.  If she won't pile them up, she won't build a house either (although she is drawn to construction we find out later after reading the school's IEP)
Stop laughing uncle! (that post is next)
I say, "She's non-verbal"
The sweet lady (seriously she was incredibly kind) responds, "Does she say 'Mama?'"
I look around to see if I'm on candid camera... winning a makeover (after my walk of shame that morning)... or is she serious?  Yes, I recall this series of questions from previous years... purely for your entertainment I'll recount a similar test in years past:
"Does she stand up?"
"Does she walk?"
"Does she go up stairs?"
ummm... sure. Did you listen to my previous answers before you asked the next?
NO! NO! and once again... NO!

in short testing day... yuk!

Move on to next day...
It went something like this:
worker: You're approved for PCA... we're transitioning her to a waiver...
ME: what? I thought we were #4000 on the waiting list...
her: No one called you? You don't have to switch you can stick with what you have.
ME: we don't have anything yet. that's what you were supposed to be doing for us...
her: Ok I'll get you started on PCA and diapers
ME:  Did she get the waiver then?
her:  IDK
I must stop because my head is pounding again trying to recount the conversation.  I still don't know what's going on and unfortunately no one else does either.  All I have now is that they are sending someone out on Monday to interview for the 20 hours (somehow we ended up with 20)... I don't know how that happened either. 
I mentally remind myself of my mantra: If they show up at my church I don't want them to be surprised that I go... 
PCA... no PCA... Diapers... No diapers...

fast forward to next day (a week or two in between days like these would be nice... but the Lord thinks He has a bigger plan and can handle it... HE can... :)  You'll see :)
We may not have help this summer but at least Abby will be at camp for July, right?
That ship has sailed too.  As if to add insult to injury it turns out that camp is for immobile kids 12 and under.  I understand they need to draw the line somewhere, but a quick email or phone call after I applied would've made it easier than spending two months thinking our summer was planned.  The deadline to apply was shortly after we moved. After a friend told me about it,  I quickly went on the home page, read the short blip about it and followed the link to apply.  I didn't read any further.  I had no idea it was for immobile kids.  I didn't hide Abby's immobility.  She walked into the eval which I also wrongly thought was to come up with a plan for her program that she would be a part of.  I didn't think they would bother to evaluate a kid who obviously didn't fit the criteria.  Once again, no body mentioned anything until I messaged someone to inquire after a friend asked if we were accepted.  "Accepted? Oh please don't tell me there's a chance we're not going..."  Most people probably already know those details and the rest might read the fine print... not me :(  Thus, mostly my own fault for not reading and asking more questions.

Thus my breakdown...
My sweet Belle pulled out an advertisement for a princess camp today and showed it to me, "If we can't send Abby to camp, maybe we can send MA... she'd love this!"  Bless her heart... wow! I love that kid!

The IEP meeting was a bit of a disaster, but that is a blog for another day...

With all that, God in His infinite wisdom gave me some dear friends...
Next door, across the street, down the street next to the bus stop, empty nesters, with children, trying for kids, having a child with a disability, and some abnormal enough to just like us for no obvious reason :) HE knew I couldn't go any further too often to find support.  He landed them in our path so we'd have to step over them in order to avoid them in our lives... not really our style :)  We stopped to not be rude.  (stepping on people is typically frowned upon and when you have a husband who will talk to a brick wall if needed... we stopped... I even stopped on my own).  When I couldn't think of new friends as I missed my old ones so much, I forgave the new friends for not being like my old ones and found beautiful gifts instead.  God is so good.  The gals on my street have even started meeting once a week for a Bible study. 

I took Abby's hand Wednesday morning (she holds my hand now as we walk to the bus together)... I'll give you a minute to let that sink in a bit... she holds my hand without picking off skin... sometimes :)
I was sure no one would be out and I'd escape watching eyes.  I didn't want my new friends to see me in such a state.  I'd prefer to ease them into my crazy world?
I don't know... it sounded good in my head!  I fussed at God about it later telling Him I won't have friends if they see how crazy my world is.  Yes, that went well... He always puts me in my place when the lunacy comes out :) 
That still small voice gently rebuked me saying, "You really want to be fake?  You don't already have a host of true friends that ran to you rather than away from you in the past thirteen years... you're going for fake this time, really?"
That's not who I am or who I want to be for that matter, yet... it seemed easier... to keep my pride?
This is my life... friends take the good, the bad and the ugly.  Real friends don't see a mess and run the other way.

Sure enough the lovely Miss Texas pulled up and rolled down her window to greet us.  She's not just a wave-as-I-drive-by kind of gal, but a pull-up-ask-a-question and care-to-wait-for-the-answer kind of gal :) The waterworks started.  She pulled over, got out of the car and hugged me.  I couldn't talk because I had to get Abby on the bus and I had to be off to her IEP meeting.  But somehow in my great pit of despair, God reminded me how big He is... with a simple hug.  I got two other texts before this day was over from two other mom friends who both have kiddos with disabilities...
"Just thinking about you today..."
By chance? good timing?... I think not.
His reminders that He's there... He doesn't have to send these blessings...
I know He's there, but He chooses to show me anyway...
 just because He can. 
I don't know what He's doing, but I do know it will be good...
it always ends up good...

She Is seriously this sweet right now... Often just plopping down on anyone's lap... Sure, Daddy's is one of her two favorites :)

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