Tuesday, June 30, 2015

Always A New Storm on the Horizon

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It feels like I've perpetually not been able to catch my breath.  There is a new challenge before me everyday relating to Noah for nearly the past seven years and circumstances often beyond our control associated with special needs parenting.  The wave of problems and complications seem endless.  Just as I do my best to resolve one problem only to have another one hits me with blunt force.  You'd think by now that I wouldn't lose my footing, that I'd be solid as a rock against these forceful waves, but I'm not.  With each passing storm I feel more worn and weary than I was the time before.   I ache for a break in the clouds but it never comes.  The phone calls keep coming, the emails, the SSI overpayments, SSI cutting Noah's monthly amounts, Medicaid denials, DMO problems, CES Waiver problems, therapies that we can't financially keep up with, Noah's Service Dog was diagnosed with terminal cancer... and then a whole collection of miscellaneous messes associated with special needs parenting that I purposely don't discuss so I don't have to stand in judgment of other people's opinions and criticism.  (Because society has yet to learn that art of never kicking a person when they are already down).

Chin up, I tell myself.   As I choke back the tears. 

Special needs parenting involves so much more than just caring for your child with special needs. 
I don't ever get a chance to be storm free.  A new one is always on the horizon.

There are some things I have to close the chapter on because I can do no more.  I've exhausted all efforts in all directions.  After we received the news about Noah's second service dog's terminal diagnosis, we just felt that we couldn't do this again a third time.  Three years and seven months later, and still no promised dog for Noah.  His first dog failing the program, the second gets cancer - and we've invested emotions and hopes both times.  How many times can one watch a dream die?   And I could be doing this circle for many more years without any real sense of the end goal in sight.   I have to let it go.  I tried, it didn't work, not because I didn't want it to, not because we didn't try with all our might to make it happen...

Noah and his 1st Service Dog, Samson
Echo, Noah's 2nd Service Dog Diagnosed with Terminal Cancer
I'm mad about SSI denying my appeal and request for waiver.  It's hopeless to fight a system that you cannot win.  Contacted a recommended disability advocate twice by phone and email; no response.   No one really probably wants to touch this.  A prior attorney I had to pay a $2,000 retainer to fight a $9,000 overpayment.  Now we are in a position where there is no money for an attorney - there is nothing, but me to fight the best I can on my own - and clearly I'm usually on the losing side of things.   And SSI just to play with me cut Noah's funding this month by $400.  Swell.  Perfect timing too with end of month bills.  And it's not like SSI really gives you their plan of attack.  They never really tell you when they are going to short you, or what your monthly will be.  They send you these fake little estimates in the mail that are never real... you can't count on anything they send you - unless it's an overpayment threat.

CES - oh God what a can of worms that all is.  I've unearthed more problems than I never imagined.  I'm sure that they kind of wish I'd just go away with all that I've stirred up.  There is so much to it, I don't even know if most families really even know or have any clue what is going on behind their backs. I can guarantee you the general public doesn't.  Then there is me that questions everything and has discovered some big wool is being pulled over lots of eyes.  I don't even know what will become of it all.  But I do wish everyone knew what was going on. 

My days are filled with fighting all these storms and then I have all these other opportunities that I'm endlessly chasing to help Noah; getting him back in good health after his lungs caught a bacterial bug, finding new holistic approaches to his diet, trying to fundraise for equipment he's outgrown that we cannot afford to replace - posting his outgrown equipment for sale - only to get beat up for trying to sell it (as the special needs community treats it like a crime if you try to sell something you paid out of pocket for) A phenomenon to guilt you into giving it up for free.  One could give away or donate nine items free of charge and attach a price tag to the tenth item - and still be a bad person in everyone's eyes.  There is a no-win situation there.

And there's even so much more besides all this going on....

I go to sleep and wake up and do it all over again.  I am trying hard not to let my struggles become my identity. 

Adversity Can Be Our Greatest Motivation for Spiritual Growth or our Deadliest Means of Discouragement. 


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