Thursday, July 07, 2011

Topsy Turvy

It was a bit soon to be bragging about how much easier my summer was going than the last one, a few posts back. The no-sleep monster is making itself cozy at this house again. That means the bat-shit crazy lady we used to call mom comes and goes without much warning. Yikes, poor Liz Mae!

Miss Ava is on an endless medication change/dial-in cycle and we happen to find ourselves in the ‘slums’ of it pretty consistently this time of year. Weather, lack of schedule, growth spurts and perhaps a few ounces of rage fueled by frustration help strengthen this pattern. We all find ourselves a bit edgy. My new hope rides on some kind of a-ha when we finally get to that EMU…until then it’s all mine to tackle.

It’s not my favorite pattern. On our trip to Sturgis the whole debacle landed us at the Catholic Priests home, for an anointment of the sick. Seriously. And Aliza mocked the Priest the entire time he was performing his little ditty all the while Ava screamed in writhing pain. Yep, didn’t take long for us to be on our way. I think it was quite clear the devil had made his home for the day.

“She carries far too many burdens” the priest said to me. A burden is a nice way to put it, possibly?  Not my choice of words, not my words either.

At least Grandma now has hope that her beliefs have been addressed towards helping Ava find consistent peace and comfort in her life. She knows Ava has been introduced to the Holy Spirit and is welcome in heaven should she need a place like that to hang out anytime soon. She also knows that it would have been a cold day in hell before I would have done this so it was best she was there to facilitate and witness it.

Win-Win ;)

As a side bar: mom was holding Aliza while she was mocking the gentleman and I am pretty certain she was laughing more than scolding. She was hiding her head in Liz Mae’s tummy so I can’t be positive. After all that Aliza discovered his stash of antique fire trucks and ‘clambulance’ replicas behind glass. Good times, you only wish you could make this shit up.

I think it is very hard to digest the schematics of our family if you haven’t witnessed the intensity first-hand a few times. It is extremely hard for people to be around suffering children; especially when the realization hits that there aren’t enough drugs, love or money in the world to fix it all up nice and neat. Actually, I know 98% of the people who know us, don’t really know what to do with all of this nuttiness.

One terrific thing we’ve currently got going is an AAC specialist that is working with Ava twice a week, in our home, on a Dynavox. She is doing fantastic, showing great cognition and proving some of those nay-sayers wrong. She will have the large monitor version due to her VI along with the tactile separator as she seeks edges to make choices now *surprise* and is doing quite nice with 4 choices on the little box. We anticipate she will be able to start with 6 choices on the larger version once it arrives. She will be in afternoon kindergarten so her special ed teacher will have lots of one on one time with her this year.

It truly is something to see her beam with joy as she talks, even if it is with a box. It about brought my mom to tears the first time she witnessed her functionally telling us what she wanted to eat for lunch and play with afterwards. It wasn’t that long ago when she refused to use those hands, mostly. We will use the iPad as a yes/no choice when the inconvenience of the big box pops up. I’ll continue to update on the big box.

We started gabapentin as a night time add-on drug just in time to see that Big Pharma seeded the antiepileptic drug study. Fabulous. I will say it worked great for 2-3 weeks knocking her out but it sure isn’t helping with neuro-pain or ESES issues now. This paradigm is exactly what makes trusting even doctors daunting in this mad, mad world. Greed is a bottomless pit, this we all know. Partner that idea with the desperation of epilepsy and the opportunities are vast for creating big fat cash cows in the medical world; presumably without consciousness.

What are you going to do?

Our house is as topsy turvy as the rest of America, I figure. I was to busy dealing with my own usualness to catch much of that awful court case that the media has cleverly been distracting us from meaningful thinking with. What’s wrong with this society? Shouldn’t we focus our *stupid box* time on a bit more substance? Especially if we are all going to put our thinking caps on and weigh in on how this shit should work.

Sorry sweet Caylee, your story is tragic. How about many others like her that miss out on this countries current feeling of haste that revenge wasn’t achieved? I agree that crazy chick and her even crazier family aren’t innocent. Poor Arrone Thompson in Aurora, CO was gone for over a year before anyone even started looking. Some of us are capable of more than others but this isn’t a friggin’ societal first by any means.

Where is all this enthusiasm to gather detailed information, follow a topic and opine on Election Day?

Sadly, that spoiled brat Casey Anthony screams a hint of all Young Americans today, in my opinion. Entitled to this, that, and the rest. Lost in an endless list of gadgets, social media, instant gratification and the ferocious appetite for more, pretty please?

Ain’t that America…?


Robyn said...

I think your comment about today's youth hits the nail on the head, throw in an utter lack for any authority and some "the world revolves around me" for good measure. And I am in shock about the priest part of your post. ;)

Poor Ava, I can't even imagine how much pain she is in, but I'm so glad the dynavox is working out for you guys. Just think, back to school is around the corner. We still need to get together, I think Aliza would have Blake wrapped around her little finger.

Robyn said...

Oh, and little Arrone Thompson's story absolutely broke my heart. I can't imagine no one missing a child. :(

Ch said...

What?! Cindy Hugen almost brought to tears! Just kidding, I admire your mom and you so much Taz! Your mom is so good with Ava Bean - we wish we were closer so we could give you all a break. I know it is so hard to see your child in pain - hopefully the Dynavox will help her express herself more and more. Thank goodness you have Liz Mae to put a little levity into your lives! Love you guys!

Cheryl said...

That's supposed to be Cheryl not Ch - oops!

Krista :) said...

I so heart your blog.

Anonymous said...

*madly struggling for upbeat intro*

Love the pink sandals!

Your visit to the padre was an act of love for your mother. You have my utmost admiration.

Me, too. Spend *zero* time watching the court case.

Hoping to read you have hit the med-jackpot for effectiveness soon.