Thursday, May 29, 2014

To Be the Fool

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Crossroads, journey, decisions, quest, a new chapter in life, two paths to choose from, changes, choices to be made, ideals, hope of a bright tomorrow, happiness, laughter, trust in life, spontaneity, innocence, trust, openness. We must make our choices, learn when to trust our resources, and decide when to step into the great unknown.  When the challenge arrives, will we be up to it?

The saga continues for a piece of equipment for Noah called the Krabat Pilot Crawling Device.  A battle that has been dragging on since October 2013.   After a win in Court for Noah in March of 2014, the State Department filed an Exception to the Initial decision (appealing Noah's win), and here we are at end of May and I received yet another Order indicating the Court has reversed Noah's win.  What was a win based on the ability to show medical necessity was reversed now on the failure or belief that the device is now unsafe.  I now have 15 days to show cause of why the Court should not have reversed Noah's win.  

I'm also rather frustrated as the Court pointed out that the first steps before forcing us to appeal is a the request for a "peer to peer" review or a request for reconsideration.  However, upon contacting Noah's durable medical equipment (DME) provider to inquire about the next steps after this denial I was told:

"The denial is for the crawler system.  Is you want to appeal the instructions are on the back of the denial.  Please let me know if you are going to appeal so I can note it in my system."

There's a strong possibility that my nearly year fight could have all been avoided with proper information and having Noah's doctors and care providers do a "peer to peer" with the State to reassure them that this was an appropriate device for Noah, or a request for reconsideration with additional supporting documentation if necessary.   Yet per usual, the theme of my life, learning the hard way.  

Part of me says I should file my Motion for Reconsideration within 15 days.  Part of me says what is the point.  The belief from even family is just give it up already.  After all I'm just making myself look like a fool.  And how long can one person really fight?  I am indeed just one person.   No attorneys, no good guidance from his DME, from no real support from anyone what chance to I really stand?  The odds are certainly continually stacked against me.  

Some days you do feel like the everyone is just sitting back having a grand laugh at your expense.  Look at little Stacy who thinks she'll be a hero for her little boy... funny isn't it?  Go ahead laugh.  Can't hurt any more than it already does.

The general consensus is that I'm a masochist.  Maybe I am a rare beast.  Maybe everyone except me would just roll over and play dead and accept the word "no" we're not going to help your child.  Every single aspect of anything that has to do with Noah is off the charts complicated and challenging.  There is no easy day, no day without a bad news email, phone call or dilemma or someone in your face at your door telling you how you should be grateful they gave you a "free ramp" even though they've strung you along for 6 months lying to you that they'd help fix the sprinkler system they cut, the stones that are raising, the stones even lacking sand, and the sand piling up by the front door.... as the contractor's words ring out in my head "don't worry you'll never track in not one grain of sand."  Never mind the garden and plants they killed that and the continual change of design plans... and when I ask them how they'd feel if they were me the response was "I'm not going to answer that."  And then was gruffly told to dig out the stones myself to level them and a damaged sprinkler system was a small price to pay.  Sometimes I have to believe in karma because there is no other retribution.

I feel when you have a child with special needs you hear more lies than truth.  Which makes it very hard for me to determine a "good egg" from a "bad egg."  Part of the problem is that you're really at the mercy of so many people's good will when you're in this situation.   Noah's needs, and those like him, are great.  Medicaid fails you, friends and family grow bored with fundraising efforts, and after a while you're really seen as a broken record playing the song "Help Me," over and over again.   Believe me no one could hate that song more than I do.  But I sing it just like the thorn bird sings to its death. 

There's that continual whisper though, it is gentle and soft, and it wraps me up in faith-like belief that justice and truth and all that is good will prevail.  My soul seeks it.   It tells me to keep going. It feels bigger than me and it is this internal drive that says I cannot stop trying, Noah depends on it.  I try to tell the whisper how unrealistic it is pushing me on and on, but it is relentless.  It nudges me, prods me along.  


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.